5/30: Our beautiful baby is one year old today! She sure made quite the entrance! She went from a tiny, feisty 2 pound baby, to very happy and, still feisty, 23 pound baby! We love you so much, Annalucia, you bring so much joy to our lives!
5/25: We celebrated Annalucia's birthday! She slept for the first half of it, but then was awake and happy for the rest. We made her a pudding/whipped cream cake so we wouldn't have to worry about crumbs and choking. I'm not sure how much she liked it. She mostly smeared herself with the pudding and sometimes put her fingers in her mouth. But it was a very fun day celebrating with our families!
5/30: So much to update! A couple weeks ago Annalucia had an eye exam. It went really well. He did find that she had the beginnings of farsightedness and astigmatism, but they weren't related to prematurity since the problems in the eyes matched up. So glasses will probably be in her future!
Yesterday she had a cardiology appointment to check on the holes in her heart. Very long appt! She had an echo and an ultrasound. Two of the holes in her heart closed (PDA and VSD)!!!! Those were the holes that really caused her problems in the nicu. She has one more small hole (PFO) near the top of her heart that's still open, but it's nothing to be concerned about at this point. She can go a whole year before her next appointment!
About two weeks ago (or more), Jon and I bought tickets for the three of us to fly to Colorado for my brother Dimitri's wedding. We've been talking to so many people (nurses, therapists, etc) since then about whether Annalucia will need oxygen on the plane. It was finally decided that she should be okay without it. Then on tuesday I got a call from her pulmonolgist telling us she WOULD need oxygen if flying....well, oxygen tanks aren't allowed on planes, and the only other thing that would work is an oxygen concentrator. The problem with that is that it is only good for people who need a flow of 1/2 liter or higher. Annalucia would be on 1/8. Thankfully Joy, Liz, Ben, and Sam are heading to Colorado for this weekend, so Annalucia was able to travel with them. BUT....I'm really missing her. They left last night. Such a change in plans!
Annalucia is 23 pounds, 4 ounces now She is almost in the 90th percentile for weight in actual age, and above the 98th percentile for adjusted age! And....the 10th percentile for height.....looks like my baby will be getting my height!
Yesterday she had a cardiology appointment to check on the holes in her heart. Very long appt! She had an echo and an ultrasound. Two of the holes in her heart closed (PDA and VSD)!!!! Those were the holes that really caused her problems in the nicu. She has one more small hole (PFO) near the top of her heart that's still open, but it's nothing to be concerned about at this point. She can go a whole year before her next appointment!
About two weeks ago (or more), Jon and I bought tickets for the three of us to fly to Colorado for my brother Dimitri's wedding. We've been talking to so many people (nurses, therapists, etc) since then about whether Annalucia will need oxygen on the plane. It was finally decided that she should be okay without it. Then on tuesday I got a call from her pulmonolgist telling us she WOULD need oxygen if flying....well, oxygen tanks aren't allowed on planes, and the only other thing that would work is an oxygen concentrator. The problem with that is that it is only good for people who need a flow of 1/2 liter or higher. Annalucia would be on 1/8. Thankfully Joy, Liz, Ben, and Sam are heading to Colorado for this weekend, so Annalucia was able to travel with them. BUT....I'm really missing her. They left last night. Such a change in plans!
Annalucia is 23 pounds, 4 ounces now She is almost in the 90th percentile for weight in actual age, and above the 98th percentile for adjusted age! And....the 10th percentile for height.....looks like my baby will be getting my height!
5/5: Pascha (Orthodox Christian Easter)! We went to my parent's for the weekend and had a great time. Annalucia's schedule was really messed up so she didn't get as much sleep as she normally does, but she did pretty good despite that. Had a wonderful time hanging out with my family, then went to a beautiful service. The next day was an Easter egg hunt and music outside,followed by Vespers, then the four hour drive home!
4:30: Went to the zoo with some good friends up near Green Bay. Annalucia seemed pretty uninterested in the animals, but then again, it was really bright out, she might not have wanted to look around much because of that! But it was a beautiful day out and we had a great time!
4/27: Enjoying the nice weather outside! This is the first time she's really been able to hang out in the sun. She seemed to love it :) After about an hour or two she needed to come in for food and sleep.
Being off oxygen during the day is going really well! I was really nervous about it, but she's been of great color and has been very happy. I think sometimes she misses being able to play with her cords!
Being off oxygen during the day is going really well! I was really nervous about it, but she's been of great color and has been very happy. I think sometimes she misses being able to play with her cords!
4/25: Went swimming! First time she went aaaaand....she didn't like it. She screamed for a while, and then eventually, after going really slow with everything, got used to it. She never fully seemed to be having fun though (this picture was before we got into the water). I'm hoping the more we go the more she likes it!
4/12: Annalucia is doing great so far! She seems to love being free, and being able to go to each room of the house so easily. We are SO enjoying not having to worry about cords and machines during the day! It's a giant relief and makes things so much simpler. We still "hear" her machine beeping at us at random times, since it was such a frequent noise in our lives.
Night is, for the the most part, pretty good. She still desats a bit, but normally nothing too bad.
Night is, for the the most part, pretty good. She still desats a bit, but normally nothing too bad.
Update 4/4/13: Results are in! ANNALUCIA IS OFF OXYGEN DURING THE DAY!! We just need to put it on her at night while she sleeps. :)
She had 7% of desats during her night study. They want someone to have 3% or less to completely come off oxygen.
It's so weird getting used to no cords and nothing extra attached to her! We can move around the house without bringing along a tank and monitor! :) :)
Our goal is to have her off completely by her 1st birthday. So close!!
She had 7% of desats during her night study. They want someone to have 3% or less to completely come off oxygen.
It's so weird getting used to no cords and nothing extra attached to her! We can move around the house without bringing along a tank and monitor! :) :)
Our goal is to have her off completely by her 1st birthday. So close!!
4/3/13: Wow. Last night was one difficult night. But I'll get to that. On Monday Annalucia had an appointment with her Pulmonologist. He said she was doing great, and with the weight she was at, she should be able to get off oxygen by her 1st birthday!!!!!! I nearly cried. We talked about her desats, and about how she is doing better for longer periods of time off it. He thinks the monitor might be picking up some of them wrong, since she doesn't turn blue during any of them (yay!). He said it's time to do a night trial without oxygen! Ahhhh! We had to pick up a different monitor from ThedaCare, one that records every desat she has, so they'll be able to see where she's at. The problem with this monitor is that it doesn't ring off if she gets below 88. All day I was scared about the trial, because part of me didn't think she was ready. BUT, I'm not a doctor, so I compromised by hooking her up to both monitors, since the one she normally uses alarms if she gets below 86. So we get ready for bed and she's all hooked up, but no oxygen this time! Problem: the monitors are showing different numbers! WHAT?? Sigh. The one she normally uses is showing about 5 or 6 numbers lower than the other one. So the one with the memory chip would be showing she's at 91, but her normal one is ringing off at 85. And it kept doing this. All I could do was watch the numbers, freaked out because I didn't want to have her damaged because we rushed things. I didn't know which one was correct. The whole situation took me back to when she first came home and how scary everything was, and I ended up crying for a while. Who knew it would be so scary with her getting OFF oxygen?? We ended up adjusting the normal monitor to only ring off if it got to 80, since that would mean she was really at 85 or 86 (assuming the newer one was the correct reading), and finally fell asleep. Woke up to her being around 98 :)
We returned the monitor for them to download it, and now we wait. I feel like when she does finally come off oxygen I'm going to be a mess for a few days!
We returned the monitor for them to download it, and now we wait. I feel like when she does finally come off oxygen I'm going to be a mess for a few days!
3/27: Hit 20 pounds at not even 10 months! She's starting to have an easier time sitting up on her own, and has rolled over a few times. She LOVES her exersaucer. And she's still enjoying her mashed vegatables, but not really sweet potatoes. She had to say goodbye to a few Birth to 3 therapists that have been coming since Annalucia came home :( The program changed a few things and Annalucia ended up getting different therapists. So that's pretty sad. I liked them and was really comfortable with them!
March 9: Yesterday Annalucia FINALLY rolled over! She went from back to stomach. :) she seemed awfully surprised at her new perspective of the room! Today she ate mashed carrots for the first time and loved it! She kept impatiently trying to grab at the spoon to put it back in her mouth.
Feb 22:
Birth to 3 came the other day and told me they would never have thought Annalucia
would be doing so well after all she's been through and after all that could
have happened, that she's a miracle :) they also said they loved coming to our
place and seeing Annalucia, and that it brightened their day to come :) Well
that certainly put a smile on my face!
Birth to 3 came the other day and told me they would never have thought Annalucia
would be doing so well after all she's been through and after all that could
have happened, that she's a miracle :) they also said they loved coming to our
place and seeing Annalucia, and that it brightened their day to come :) Well
that certainly put a smile on my face!
Trying out rice cereal and loving it!
Jan 19: Update: it's been forever since I've updated on Annalucia! She's now 15 pounds, 5 ounces :)
A few weeks ago she went to her pulmonary (for her lungs) appt in Madison. We were told that she would need to remain on oxygen for quite a while yet. Her lungs are really scarred from being in the NICU, from how many times she was intubated and extubated, the few times she got pneumonia, how early she was, etc. So the only thing we can do right now is wait for her lungs to get bigger. As her lungs get bigger, her scarring will stay the same size, so it should affect her less.
The last few days she been struggling a bit more than normal with her eating and desatting at a lot of random times. She's also not sleeping through the night this past week [ :( ]. But hopefully that's just something temporary. Besides that, she's doing really well! She's such a happy girl, and has discovered her feet! I'm guessing she'll roll over soon too :)
A few weeks ago she went to her pulmonary (for her lungs) appt in Madison. We were told that she would need to remain on oxygen for quite a while yet. Her lungs are really scarred from being in the NICU, from how many times she was intubated and extubated, the few times she got pneumonia, how early she was, etc. So the only thing we can do right now is wait for her lungs to get bigger. As her lungs get bigger, her scarring will stay the same size, so it should affect her less.
The last few days she been struggling a bit more than normal with her eating and desatting at a lot of random times. She's also not sleeping through the night this past week [ :( ]. But hopefully that's just something temporary. Besides that, she's doing really well! She's such a happy girl, and has discovered her feet! I'm guessing she'll roll over soon too :)
Update 12/18: No apnea for a month and is now OFF one of her machines!!!!!! Yay!! We literally were dancing in the living room after hearing she's done with this machine :) next step, oxygen!
Update 12/13: Annalucia went in for a synagis shot today. A synagis shot protects babies who were born early, low birth weight, in a large family, issues with their lungs like chronic lung disease, etc,. It fights against RSV disease. RSV stands for respiratory syncytial virius, which is like a cold.
Most kids before the age of two catch RSV, but for a baby who was early and has lung issues, it very easily can turn into pneumonia and bronchiolitis, and is the number one reasons babies under a year old have to be admitted into hospitals.
She goes in once a month throughout the winter season and gets a shot for it...she definitely hates it :(
Most kids before the age of two catch RSV, but for a baby who was early and has lung issues, it very easily can turn into pneumonia and bronchiolitis, and is the number one reasons babies under a year old have to be admitted into hospitals.
She goes in once a month throughout the winter season and gets a shot for it...she definitely hates it :(
Update 12/10: Had a physical therapist from Birth to 3 come to our house today for her biweekly check up. Everything is going great! Annalucia is doing really well tracking with her eyes and keeping her head up. She still hates tummy time, so hopefully she'll start liking it soon!
We also had Annalucia's RN come for her weekly check up. She got checked over, weighed (her weight is over in the 'Weight' section!) along with a few other things.
We also had Annalucia's RN come for her weekly check up. She got checked over, weighed (her weight is over in the 'Weight' section!) along with a few other things.
For anyone who does not use facebook, and checks this blog for updates, forgive me for not updating it more often! From now on I will be updating it once or twice a week, so make sure to keep checking in! And check out her videos on youtube! :)
Dec 5: Took Annalucia in to the hospital today for an eye appt. She had to be here by 7 so they could prep her and get her eyes dilated for a 9 o clock appt. She changed into a tiny hospital gown and had lots of people check her over, then they took her away to put her under anesthesia. It was only for a check up, but if her left eye hadn't changed yet, they would do surgery in that eye. Even though shewasn't getting much done, I almost cried when they took her away! Oh to be a mom....
About a half hour later, her eye doctor came out to tell me they were done and everything went well! Her left eye regressed back to a good stage, basically repaired itself, and they didn't need to do surgery! And won't need any more eye appts till she's a year old :) yay!
However, she needs to stay overnight since she was so premature and because of her apnea, they want to watch her while all the anesthesia comes out of her system just to make sure nothing bad happens.
Even with her previous eye surgery and regressed left eye, there's still a good chance at some point she'll need glasses early on, or just some other eye issues. Too early to tell right now.
She's 12.3 pounds, barely fitting into her newborn clothes, and almost ready to move up a diaper size! She's discovered she can make lots of spitty mouth sounds and makes even more drool. She stands really well when we hold her up, and has great head control :) she's right on track for her adjusted age. Now we just need her to not need her apnea machine and oxygen!
About a half hour later, her eye doctor came out to tell me they were done and everything went well! Her left eye regressed back to a good stage, basically repaired itself, and they didn't need to do surgery! And won't need any more eye appts till she's a year old :) yay!
However, she needs to stay overnight since she was so premature and because of her apnea, they want to watch her while all the anesthesia comes out of her system just to make sure nothing bad happens.
Even with her previous eye surgery and regressed left eye, there's still a good chance at some point she'll need glasses early on, or just some other eye issues. Too early to tell right now.
She's 12.3 pounds, barely fitting into her newborn clothes, and almost ready to move up a diaper size! She's discovered she can make lots of spitty mouth sounds and makes even more drool. She stands really well when we hold her up, and has great head control :) she's right on track for her adjusted age. Now we just need her to not need her apnea machine and oxygen!
Dec 5: In a mini gown going in for an anesthesia eye check!
Nov 30: Taken off the caffeine she takes for her apnea! Her machine was downloaded and no apnea spells were on there, so they had us stop giving it to her. She's still on the apnea machine for the next few weeks just to be sure everything will be normal after the caffeine leaves her system
For anyone who does not understand quite what the caffeine was used for, I found this article really great in explaining!
http://www.medicalnewstoday.com/articles/43764.php
For anyone who does not understand quite what the caffeine was used for, I found this article really great in explaining!
http://www.medicalnewstoday.com/articles/43764.php
November 30: HAPPY 6 MONTH ANNIVERSARY!!
Update 11/8: Annalucia is up to 10 pounds, 1 ounce!! 2 months adjusted and almost 5 and a half months old :)
She was struggling for a while with gaining weight. She went a week without gaining anything, the next week only gained half an ounce. The week after that she went up about 7 or 8 ounces!
She had her cardiology appt a little while back to check on the holes in her heart. She still has 3 holes, but they were all the same size as when she came home, so they're not worried at all :) Her next check up will be in about 6 months to make sure they close.
She's continuing with getting her eyes checked out. Her right one (that had the surgery), is doing just fine and is not even needing to be looked at anymore! Her left one will continue getting checked for now. I believe it's at level 2. If it progresses past 2, maybe to 3 or 4, then she'd need surgery for that eye. It's unlikely it will progress at this point of her life, but there's still a chance, and until it goes backwards, to level 1, she'll keep with the checkups. I hate those checkups :( They give her eye drops over the course of an hour, then take her back to a room and prop her eye open and move it around to check inside. She HATES it, I hate it....hopefully she won't need many more of those.
She's eating better! We moved her up to a medium flow bottle, which helps her feeding times get shorter, therefore stops her from burning as many calories. She still struggles, but no where near how she was when she came home! She's been really good with her oxygen as well. She mostly can stay at 1/16. Today and last night she needed to be bumped to 1/8, but that's not terrible. We've stopped trying to wean her off oxygen for now. We found that when we did that, she'd have a horrible next day, both with her oxygen stats and her feeding. So we'll just give her the time she needs, and hopefully she'll let us know when she doesn't need it!
We still have a nurse coming once a week, plus Birth to 3 people. There is a physical therapist, speech therapist, recreational therapist, and I think one more, but I can't remember now. All making sure she's developing how she should, and ways of helping her with any problem areas :)
If anyone would like to visit, don't hesitate with talking to Jon or I! :)
She was struggling for a while with gaining weight. She went a week without gaining anything, the next week only gained half an ounce. The week after that she went up about 7 or 8 ounces!
She had her cardiology appt a little while back to check on the holes in her heart. She still has 3 holes, but they were all the same size as when she came home, so they're not worried at all :) Her next check up will be in about 6 months to make sure they close.
She's continuing with getting her eyes checked out. Her right one (that had the surgery), is doing just fine and is not even needing to be looked at anymore! Her left one will continue getting checked for now. I believe it's at level 2. If it progresses past 2, maybe to 3 or 4, then she'd need surgery for that eye. It's unlikely it will progress at this point of her life, but there's still a chance, and until it goes backwards, to level 1, she'll keep with the checkups. I hate those checkups :( They give her eye drops over the course of an hour, then take her back to a room and prop her eye open and move it around to check inside. She HATES it, I hate it....hopefully she won't need many more of those.
She's eating better! We moved her up to a medium flow bottle, which helps her feeding times get shorter, therefore stops her from burning as many calories. She still struggles, but no where near how she was when she came home! She's been really good with her oxygen as well. She mostly can stay at 1/16. Today and last night she needed to be bumped to 1/8, but that's not terrible. We've stopped trying to wean her off oxygen for now. We found that when we did that, she'd have a horrible next day, both with her oxygen stats and her feeding. So we'll just give her the time she needs, and hopefully she'll let us know when she doesn't need it!
We still have a nurse coming once a week, plus Birth to 3 people. There is a physical therapist, speech therapist, recreational therapist, and I think one more, but I can't remember now. All making sure she's developing how she should, and ways of helping her with any problem areas :)
If anyone would like to visit, don't hesitate with talking to Jon or I! :)
Update 10/16: 9 pounds, 2 ounces! Getting so big!! These last few days she has been smiling even more than normal :) I love it!! It's amazing the joy you can feel just by sitting and watching your child, especially when they won't stop smiling!
Annalucia has been pretty good lately, although she still has some apnea spells. They mostly come when she's eating, but one came when she was sleeping, and she ended up needing stimulation.
She's eating a ton and a lot of times does really well, but there are still many feedings where she chokes, and most of them she desats. She loves to hold onto the bottle and on either mine or Jon's finger while eating :)
The doctor told us to try to take the tubing out of her nose for an hour a few times a day to give her lungs time to strengthen up and get stronger. She's been doing really good with that! Though one time we got overconfident and kept it off longer since she was doing so great, and found that the next day was a really bad day for her, full of desats and higher oxygen. She's definitely not at that point yet, so we'll just stick with the hour long stretches for now! As of right now she's statting 100 :) Yay!
Next week she has an appointment with the cardiologist, so we'll see how her heart is doing!
Annalucia has been pretty good lately, although she still has some apnea spells. They mostly come when she's eating, but one came when she was sleeping, and she ended up needing stimulation.
She's eating a ton and a lot of times does really well, but there are still many feedings where she chokes, and most of them she desats. She loves to hold onto the bottle and on either mine or Jon's finger while eating :)
The doctor told us to try to take the tubing out of her nose for an hour a few times a day to give her lungs time to strengthen up and get stronger. She's been doing really good with that! Though one time we got overconfident and kept it off longer since she was doing so great, and found that the next day was a really bad day for her, full of desats and higher oxygen. She's definitely not at that point yet, so we'll just stick with the hour long stretches for now! As of right now she's statting 100 :) Yay!
Next week she has an appointment with the cardiologist, so we'll see how her heart is doing!
Update 10/3: The last few days have been a bit more rough. She's been desatting a lot, and having an even harder time with her feedings. We've had to put her oxygen up higher a lot more then in the last week. She has also been a lot more cranky in the last few days then she normally is. She cries and cries at her feedings, not happy when eating and not happy when not eating. Very frustrating!
We had to run a few errands the other day, so we put her in her stroller and she just loved it! Looking around at everything, trying her hardest to stay awake.
The other day she completely blew out of her diaper! Alllllll the way up her back! Not sure how it happened but she definitely needed a whole new outfit on! Picture of it below :)
I made a youtube channel of videos of her, so I'll have a link set up for that on one of these pages! We have a few of when she was less than a month old, a couple a little while after, and a ton of her right now :)
We had to run a few errands the other day, so we put her in her stroller and she just loved it! Looking around at everything, trying her hardest to stay awake.
The other day she completely blew out of her diaper! Alllllll the way up her back! Not sure how it happened but she definitely needed a whole new outfit on! Picture of it below :)
I made a youtube channel of videos of her, so I'll have a link set up for that on one of these pages! We have a few of when she was less than a month old, a couple a little while after, and a ton of her right now :)
Update 9/31: Still doing well! She's on 1/16 most of the time now, although every once in a while we'll need to put her up to 1/8 if she has a lot of desats. If her nose piece slips out of her nose, we'll let it go for a bit so she can start getting used to not having it. Once she starts desatting a lot we'll put it back in.
The other day something weird happened. It seemed as though she was having an apnea spell, but the apnea machine didn't go off....I had just finished feeding her, then laid her down so I could go use the bathroom. I came back and sat next to her, and her face was turning blue, then all of a sudden her O2 was dropping fast...pretty darn scary...I had to stimulate her to get her to take good, deep breaths.
Today Annalucia went to church for the first time :) Sadly I was sick, so I couldn't join her and Jon, but from what I've heard, she slept most of the time! AND, oh my goodness...she had the biggest blow out of a diaper today it was ridiculous. Through her clothes and up her back! I bet she was feeling better after that one!
Still going to the chiropractor, and, since she's mainly on 1/16 now, I feel it's helping!
8 pounds, 9.6 ounces!!
The other day something weird happened. It seemed as though she was having an apnea spell, but the apnea machine didn't go off....I had just finished feeding her, then laid her down so I could go use the bathroom. I came back and sat next to her, and her face was turning blue, then all of a sudden her O2 was dropping fast...pretty darn scary...I had to stimulate her to get her to take good, deep breaths.
Today Annalucia went to church for the first time :) Sadly I was sick, so I couldn't join her and Jon, but from what I've heard, she slept most of the time! AND, oh my goodness...she had the biggest blow out of a diaper today it was ridiculous. Through her clothes and up her back! I bet she was feeling better after that one!
Still going to the chiropractor, and, since she's mainly on 1/16 now, I feel it's helping!
8 pounds, 9.6 ounces!!
Update 9/25: The last few days has went pretty well! Not as much apnea as the last couple of weeks, but still some every once in a while. Her oxygen still likes to dip low, BUT we don't have to adjust it as much when she eats! That's HUGE! We've went a few feedings where she could stay at 1/16 with barely any desats :) It might only be a few, but that's a great step forward!
She had an eye appointment today, just to make sure both her eyes are fine. Right eye is just fine (the one that had the surgery), and her left one still needs to be checked every few weeks since it still has a chance of taking a bad turn. She handled getting the eye drops like a champ :) Hated the actual exam (as did I....), but calmed down once cuddled.
Right now she's napping! And poor Jon is sick with a fever, so he's upstairs sleeping the night away! :(
She had an eye appointment today, just to make sure both her eyes are fine. Right eye is just fine (the one that had the surgery), and her left one still needs to be checked every few weeks since it still has a chance of taking a bad turn. She handled getting the eye drops like a champ :) Hated the actual exam (as did I....), but calmed down once cuddled.
Right now she's napping! And poor Jon is sick with a fever, so he's upstairs sleeping the night away! :(
Update 9/20:Yesterday we took Annalucia to the chiropractor. Things went really well! The place is run by a husband and wife, and both are extremely kind people. Throughout the whole appointment I was able to hold Annaucia. The adjusting was all extremely gentle, literally just slight pressure. I actually thought she was still just checking her over, but it was done before I knew it! We'll be going in a few times a week for a while, and hopefully should see some improvement by next week!
For the last couple of days there has been NO APNEA! Yay!! She's starting to eat more in a setting, although when she got weighed today she had lost a small bit of weight. Not even half an ounce though, so nothing really to worry about.
As I was feeding her today, she kept wanting more, so by the time she stopped eating, she reached 170 ml! Annnnnnnnd spit up (waterfalled) all over and through my shirt, my pants, the couch, her clothes and socks, and arm! It was so impressive I couldn't even be upset :)
For the last couple of days there has been NO APNEA! Yay!! She's starting to eat more in a setting, although when she got weighed today she had lost a small bit of weight. Not even half an ounce though, so nothing really to worry about.
As I was feeding her today, she kept wanting more, so by the time she stopped eating, she reached 170 ml! Annnnnnnnd spit up (waterfalled) all over and through my shirt, my pants, the couch, her clothes and socks, and arm! It was so impressive I couldn't even be upset :)
Update 9/18: Finally, time to focus my mind into an update! Annalucia came home on September 7, one day after her due date, and on the 100th day of her nicu stay. It took hours at the hospital to get everything ready to go, everything signed, packed up, looked over, as well as watching a cpr video. Finally, with her in an adorable pink sweater that Lars and Nana gave her, we bundled her up in her car seat and ATTEMPTED to click it into the base ;) After lots of hard work (keep in mind we were using my two door car, so trying to get the car seat in right, along with all the machines and cords, didn't go too easily!) trying to figure out why it wasn't working, we turned around the base and it worked! and we were on our way!
It was amazing and so right to know she was in the back of our car, with us, and finally being the ones in charge of her.
Having her home has been so amazing. We're starting to get to know her much better than when she was at the hospital, and we're always around for her awake times now!
I wish I could say it's all going smoothly, but I can't. As wonderful as it is having her home, it's still the rollercoaster ride it was while she was in the hospital. Her oxygen dips often, with the 50's and 60's not being uncommon. She also stops breathing about twice a day, so her apnea machine goes off. A lot of those times she'll remember to breathe, but there's also been a number of times with her turning blue, and one where we really had to step in to try to stimulate her to take a breath. What's terrifying is that we never know if there will be a moment when she won't remember to breathe and we'll need to attempt cpr. These happen to her mainly around her feedings, but it's happened other times...in the car, snuggling.
Annalucia is finally getting enough food in a day, which is so wonderful! But taking in the food is a real struggle. She often desats pretty far, chokes, or has her apnea.
So those are her three hurdles she still needs to master. I'm hoping that'll get better with age. We actually have a chiropractor appointment on wednesday for her. Apparently chiropractors work with premature babies all the time, and are able to fix oxygen problems and feeding problems, so please pray they can help her!!
With Annalucia's machines that go off, and how often she needs to eat, we're not actually able to sleep during everything. So what we've done is split up the night where one of us goes to bed for a few hours, then gets up and the other one goes to sleep. We pretty much live in the living room now, with the exception of taking a nap upstairs. We have the machines set up in a little shelving type unit that also holds diapers and all that good stuff.
Since Annalucia was so premature, she's also very high at risk for infections, even more so than a normal newborn. During these next few months (flu and cold season) we're supposed to mainly keep her inside, at least as much as we can. If people hold or touch her, they need to wash their hands for at least 20 seconds, and definitely no on sick can be around her! If she does happen to get sick, she'll more than likely have to go back to the nicu to get well again.
We take her into the doctor once a week, where she gets her vitals taken, weighed, and sometimes gets her blood checked for a few different things. We also have a nurse come to our house twice a week to make sure things are going well with her, vitals and weight again, and to answer any questions we might have. THEN we also have a lady come to make sure the machines are working right, as well as any other specialty appointments she might have.
A few days ago Annalucia went in to get her eyes checked. It was so awful to watch :( She was so unhappy with everything going on, and so was screaming her lungs out. The doctor then had to prop her eye open with a little piece of metal...while he then proceeded to touch her eye with things and make sure everything was fine. Ugh....but good news, her right eye that had the surgery is doing fine, and her left eye hasn't gotten any worse. There's still a possibility of her left eye worsening since she's still on oxygen, so he'll need to check her every couple of weeks. :(
Oh yeah! I don't think I mentioned this before, but she had a brain scan (or whatever the fancy word is!) and everything looks normal, no swelling, bleeding, anything out of the ordinary! She also had an heart echo done (I think that's what it's called) and both holes in her heart are small and not affecting her right now! :)
Things get very overwhelming and stressful, especially when all we want is for her to be healthy. People have been really wonderful throughout this time though. We've gotten some meals from people, which REALLY helps, because making a meal from scratch is just too much to do with everything else, and going out and buying meals also really adds up, especially with Jon being off work while we get to know Annalucia!
My sister in law Hannah came and cleaned our kitchen :) and my mother in law Joy spent a lot of the day last saturday watching Annalucia while we went to a work outing Jon had, and then she came back later that night so we could get some good sleep! We woke up like new people :)
Oh, and she weighs 8 POUNDS 4 OUNCES!!! Such a chubster! And I am pretty sure her eyes will be brown...:)
Jon and I have been really horrible with getting back to people, especially since our brains have been all over the place with everything going on. We just want to say how thankful we are with all the help we've gotten from people, so if we didn't say thank you, PLEASE know we appreciate everything all of you have done for us, more than you could know! Everyone who has donated to us on our site, through mail, or in person, THANK YOU!! If we didn't have all of you helping us with that, we wouldn't have had gas money, food, help with bills, and I don't know where we'd be! For everyone that has given Annalucia beautiful clothes and gifts from the shower, or just during her life, THANK YOU!! That has helped us immensely, and we were able to bring her home with much more peace than we would have otherwise.
It was amazing and so right to know she was in the back of our car, with us, and finally being the ones in charge of her.
Having her home has been so amazing. We're starting to get to know her much better than when she was at the hospital, and we're always around for her awake times now!
I wish I could say it's all going smoothly, but I can't. As wonderful as it is having her home, it's still the rollercoaster ride it was while she was in the hospital. Her oxygen dips often, with the 50's and 60's not being uncommon. She also stops breathing about twice a day, so her apnea machine goes off. A lot of those times she'll remember to breathe, but there's also been a number of times with her turning blue, and one where we really had to step in to try to stimulate her to take a breath. What's terrifying is that we never know if there will be a moment when she won't remember to breathe and we'll need to attempt cpr. These happen to her mainly around her feedings, but it's happened other times...in the car, snuggling.
Annalucia is finally getting enough food in a day, which is so wonderful! But taking in the food is a real struggle. She often desats pretty far, chokes, or has her apnea.
So those are her three hurdles she still needs to master. I'm hoping that'll get better with age. We actually have a chiropractor appointment on wednesday for her. Apparently chiropractors work with premature babies all the time, and are able to fix oxygen problems and feeding problems, so please pray they can help her!!
With Annalucia's machines that go off, and how often she needs to eat, we're not actually able to sleep during everything. So what we've done is split up the night where one of us goes to bed for a few hours, then gets up and the other one goes to sleep. We pretty much live in the living room now, with the exception of taking a nap upstairs. We have the machines set up in a little shelving type unit that also holds diapers and all that good stuff.
Since Annalucia was so premature, she's also very high at risk for infections, even more so than a normal newborn. During these next few months (flu and cold season) we're supposed to mainly keep her inside, at least as much as we can. If people hold or touch her, they need to wash their hands for at least 20 seconds, and definitely no on sick can be around her! If she does happen to get sick, she'll more than likely have to go back to the nicu to get well again.
We take her into the doctor once a week, where she gets her vitals taken, weighed, and sometimes gets her blood checked for a few different things. We also have a nurse come to our house twice a week to make sure things are going well with her, vitals and weight again, and to answer any questions we might have. THEN we also have a lady come to make sure the machines are working right, as well as any other specialty appointments she might have.
A few days ago Annalucia went in to get her eyes checked. It was so awful to watch :( She was so unhappy with everything going on, and so was screaming her lungs out. The doctor then had to prop her eye open with a little piece of metal...while he then proceeded to touch her eye with things and make sure everything was fine. Ugh....but good news, her right eye that had the surgery is doing fine, and her left eye hasn't gotten any worse. There's still a possibility of her left eye worsening since she's still on oxygen, so he'll need to check her every couple of weeks. :(
Oh yeah! I don't think I mentioned this before, but she had a brain scan (or whatever the fancy word is!) and everything looks normal, no swelling, bleeding, anything out of the ordinary! She also had an heart echo done (I think that's what it's called) and both holes in her heart are small and not affecting her right now! :)
Things get very overwhelming and stressful, especially when all we want is for her to be healthy. People have been really wonderful throughout this time though. We've gotten some meals from people, which REALLY helps, because making a meal from scratch is just too much to do with everything else, and going out and buying meals also really adds up, especially with Jon being off work while we get to know Annalucia!
My sister in law Hannah came and cleaned our kitchen :) and my mother in law Joy spent a lot of the day last saturday watching Annalucia while we went to a work outing Jon had, and then she came back later that night so we could get some good sleep! We woke up like new people :)
Oh, and she weighs 8 POUNDS 4 OUNCES!!! Such a chubster! And I am pretty sure her eyes will be brown...:)
Jon and I have been really horrible with getting back to people, especially since our brains have been all over the place with everything going on. We just want to say how thankful we are with all the help we've gotten from people, so if we didn't say thank you, PLEASE know we appreciate everything all of you have done for us, more than you could know! Everyone who has donated to us on our site, through mail, or in person, THANK YOU!! If we didn't have all of you helping us with that, we wouldn't have had gas money, food, help with bills, and I don't know where we'd be! For everyone that has given Annalucia beautiful clothes and gifts from the shower, or just during her life, THANK YOU!! That has helped us immensely, and we were able to bring her home with much more peace than we would have otherwise.
Update 9/3: My stomach is in knots and the reality of Annalucia coming home is starting to seem more real. I feel like crying every time I think about how she'll be home soon, and I'll be able to hold her in my arms, give her baths, sit together with her and Jon in our living room...and make sure she always know how much we love her and how special we think she is.
We got a car seat and stroller for her today, and we took the car seat into the hospital. The night before she goes home, they'll have her sit in it for 90 minutes, and as long as she doesn't desat much, and is able to bring herself back up without any help, she'll pass!
The doctors are going to see if they can wean her off oxygen within these next couple of days, although more than likely she'll end up needing it for a while after she gets home, at least around her feeding times. What that will mean, is that she'll have a nasal canula in, and two oxygen tanks. One bigger one which will stay where she mainly sleeps, and a "travel" one, that is in a little back pack. She's also going home on caffeine, which helps her with her desats, and because she's on that she'll have a monitor that'll track her heart rate and her breathing, so we'll also know if she stops breathing. She'll have a little vest on for that, as well as a pulse-ox on her foot that tracks how much oxygen she's getting in her blood. So she'll end up having probably the same amount of cords hooked up to her, but at least she'll be home!
This morning she had a MRI for her head, and no problems were found!! Yayyy! Although for some reason, after she had that test she ended up desatting all the time instead of the little bit she was doing before. She was down to 1/8 of a liter of pressure, and they were planning on putting her ever further down to 1/16 before this test, but ended up having to put her back up to 1/2 of a liter because of how she was handling it. They weren't sure what would of caused it, but by tomorrow they'll try to put her back to where she was.
Tomorrow she'll also get an EKG, so we'll find out how her holes in her heart are doing!
We got a car seat and stroller for her today, and we took the car seat into the hospital. The night before she goes home, they'll have her sit in it for 90 minutes, and as long as she doesn't desat much, and is able to bring herself back up without any help, she'll pass!
The doctors are going to see if they can wean her off oxygen within these next couple of days, although more than likely she'll end up needing it for a while after she gets home, at least around her feeding times. What that will mean, is that she'll have a nasal canula in, and two oxygen tanks. One bigger one which will stay where she mainly sleeps, and a "travel" one, that is in a little back pack. She's also going home on caffeine, which helps her with her desats, and because she's on that she'll have a monitor that'll track her heart rate and her breathing, so we'll also know if she stops breathing. She'll have a little vest on for that, as well as a pulse-ox on her foot that tracks how much oxygen she's getting in her blood. So she'll end up having probably the same amount of cords hooked up to her, but at least she'll be home!
This morning she had a MRI for her head, and no problems were found!! Yayyy! Although for some reason, after she had that test she ended up desatting all the time instead of the little bit she was doing before. She was down to 1/8 of a liter of pressure, and they were planning on putting her ever further down to 1/16 before this test, but ended up having to put her back up to 1/2 of a liter because of how she was handling it. They weren't sure what would of caused it, but by tomorrow they'll try to put her back to where she was.
Tomorrow she'll also get an EKG, so we'll find out how her holes in her heart are doing!
Update 9/1:Got to the hospital to see that Annalucia has her feeding tube taken out! She's able to eat all her feedings orally now, and, instead of eating every 3 hours, she'll eat when she's hungry, and, instead of eating a certain amount per feeding, she'll just need to eat a certain amount per day. ANDDDD the nurse says there's a good chance she can be home in a WEEK!!!!! It's seriously too good to be true.....!
8/27: 7 pounds today and doing great!!! She was able to eat 12 ml from me today with only one desat, the rest of the time she was statting 98 or higher! Right now she is snuggling against me sound asleep. She is off her vaportherm and on a 1liter nasal canula. She is now back to where she was before her last intubation, except she weighs more and her desats are way less. She's more grumpier this week than normal though. Her big hurdles she needs to get through now are to eat all her feedings from me and bottle while still breathing and swallowing, and for her oxygen to stay in the 90's.
8/24: All done with her surgery! Took her about a half hour in the beginning to get conked out from the meds, but finally did and everything went smoothly. She'll be sleeping for the next four to six hours. It's very unusual for only one of her eyes to need the surgery, instead of both. In 9 out of 10 cases both eyes progress at the same time. So for this next week they'll be putting eye drops into her right eye and pretty much keeping an *eye* on it (wink wink) (oh wow...no pun was even intended on that last one!) her left eye will still be checked once a week to make sure it doesn't get worse. It's not as likely at this point, though, because of her age (38 weeks).
8/23: The doctor called this morning to tell us that Annalucia would need laser eye surgery for her right eye because it's gotten worse. If she wouldnt get the surgery she could go blind. This is something common with preemies because of all the oxygen they have to be on, which can cause bad vision or blindness, but if caught early on its easily treatable! So please keep her in your prayers tomorrow since that's when she'll get the surgery!
Loving her pacifier!
Update 8/20: Annalucia is extubated!!!! Very early this morning she actually made the decision herself by pulling out her tube...and she was doing so well they didn't bother putting it back in. Actually, for about two minutes after she pulled out the tube she kept smiling :)
She's back on vapotherm, starting back at 6 liters. She won't be able to nurse again from me until she's getting at least 3 liters. :( She's LOVING her pacifier and very much wants to oral feed, so hopefully that'll be soon! Her cries, sneezes, and coughs are all extremely raspy from the tube being in her throat...her cries sound like Donald Duck!
So, all in all, she's doing great :) THANK YOU for all your prayers!
She's back on vapotherm, starting back at 6 liters. She won't be able to nurse again from me until she's getting at least 3 liters. :( She's LOVING her pacifier and very much wants to oral feed, so hopefully that'll be soon! Her cries, sneezes, and coughs are all extremely raspy from the tube being in her throat...her cries sound like Donald Duck!
So, all in all, she's doing great :) THANK YOU for all your prayers!
Update: 8/19: Annalucia will hopefully get her tube taken out tomorrow! Shes been on room air (21%) all day with very few desats :) Her infection and pneumonia are almost gone as well, and she's feeling much better! 6 pounds 14.8 ounces!
Update 8/17: The doctors thought Annalucia was ready to be extubated this morning, so they took out her tube and just had her on a nasal canula for about two hours. She wasn't able to breathe well enough to stay like that, so they intubated her again. An xray was done of her lungs, and it turns out that Annalucia has developed pneumonia as a result of the Strep B. So now we're looking at probably another week of being intubated while she recovers and she'll stay on the antibiotics for about a couple more weeks.
The machine gives her a certain about of breaths per minute, and, for the most part, she's not breathing much over that. Her body is exhausted, not to mention the medicine that she is on relaxes her lungs, so she doesn't feel the need to breathe for herself much.
She's starting to be more like her old self though. Her eyes were open for a lot of my visit today, and she kept trying to pull the tube out. She's a strong girl and has a lot of feisty-ness, so that has been working well for her (except for when she keeps trying to pull out her breathing tube!).
The machine gives her a certain about of breaths per minute, and, for the most part, she's not breathing much over that. Her body is exhausted, not to mention the medicine that she is on relaxes her lungs, so she doesn't feel the need to breathe for herself much.
She's starting to be more like her old self though. Her eyes were open for a lot of my visit today, and she kept trying to pull the tube out. She's a strong girl and has a lot of feisty-ness, so that has been working well for her (except for when she keeps trying to pull out her breathing tube!).
Update 8/16: Still no change for Annalucia. She's getting between 28 and 35 for oxygen, and will remain on the ventilator for a while longer yet, since she's not quite ready to have any settings turned down. She was given more lasex for all the fluid she is retaining, and lost some weight because of it. Last night when I was holding her she FINALLY opened her eyes (for days I haven't seen her open her eyes much, because of all the meds she's on), although it wasn't much, but right after she did, she smiled, so she knew I was there!
Update 8/14: I was able to talk to the doctor today, and she told me that the Strep B that Annalucia has was there since birth. For most pregnancies the mother and baby are tested beforehand to check for that, and, if found, treated. Obviously, since Annalucia was born so early, there was no time to check for that! For some reason or another, the infection manifested itself now. The doctor actually said that it was a miracle she got the infection now rather than later on at home, because at that point it is a very dangerous thing to treat.
Annalucia is very much sedated right now because she is still intubated, and she's normally such an active girl, they don't want her pulling out her tube. Within the next couple of days they'll wean her off it and she can go back in her crib. Sadly, she'll probably need to start learning all over again how to nurse, but we'll see!
Oh, and her spinal fluid came back negative for meningitis! :)
Annalucia is very much sedated right now because she is still intubated, and she's normally such an active girl, they don't want her pulling out her tube. Within the next couple of days they'll wean her off it and she can go back in her crib. Sadly, she'll probably need to start learning all over again how to nurse, but we'll see!
Oh, and her spinal fluid came back negative for meningitis! :)
Update 8/13: We got a call from Annalucia's doctor this morning, and she said that Annalucia has a blood stream infection, more than likely strep. They had to do a spinal tap on her to make sure it hadn't developed into meningitis...so we'll know more on that in 24 hours. I asked the nurse if it could have been from the immunizations that were given, and she said that would not have caused this. She will now remain on the ventilator for at least a few more days, and on the antibiotics for a week.
Update 8/12: Annalucia has had a very rough last couple of days...she's had some vaccines done over the course of a few days, and today has had a slight fever (which is normal). However, yesterday and today she has had a lot of apnea spells, once yesterday while I was nursing her...that was so terrifying....
Today she started out fine, was even able to eat most of her bottle with the nurse. Then she started having the apnea spells one after another, most lasting 20 seconds or so. They ended up intubating her and putting her back in her incubator since that's easier to work with. They've done different cultures and labs because they suspect it's an infection that's causing all this (some of the cultures have come back to support that thought). So right now she's on antibiotics until they know more. She's worn out and letting the machine do all her breathing for her right now.
We were talking to a nurse last night, who said it wasn't too likely she'll even be home by her due date (Sept 6).
Please continue your prayers for her and for us...this has been the hardest thing we've ever had to do, and we're struggling to hold ourselves together.
Today she started out fine, was even able to eat most of her bottle with the nurse. Then she started having the apnea spells one after another, most lasting 20 seconds or so. They ended up intubating her and putting her back in her incubator since that's easier to work with. They've done different cultures and labs because they suspect it's an infection that's causing all this (some of the cultures have come back to support that thought). So right now she's on antibiotics until they know more. She's worn out and letting the machine do all her breathing for her right now.
We were talking to a nurse last night, who said it wasn't too likely she'll even be home by her due date (Sept 6).
Please continue your prayers for her and for us...this has been the hardest thing we've ever had to do, and we're struggling to hold ourselves together.
Update 8/9: Annalucia was due for a bath, so we got everything ready for her. They wanted her bath done before she was fed so she wouldn't get jostled around and spit up and everything. She was SO hungry! Anything that was nearby she latched onto and started trying to eat.
"Wait! There's no milk in there!!"
Update 8/6: Annalucia has been moved to a crib AND has started nursing!! She was able to get moved off the vapotherm to only one liter of support, using the nasal canula. She's maintaining her body temp very well, and seems to be enjoying her open aired crib :) And I've noticed this a lot...when she opens her eyes and sees you there, she smiles! She seems to be a very happy girl :)
Nursing her has proven to be a very interesting experience...frustrating and wonderful at the same time. She doesn't have the energy to exclusively feed from the mouth, but every once in a while she can finish a whole bottle of food! And when I'm feeding her, she tends to fall asleep against me. She at least stats really well when that happens!
Nursing her has proven to be a very interesting experience...frustrating and wonderful at the same time. She doesn't have the energy to exclusively feed from the mouth, but every once in a while she can finish a whole bottle of food! And when I'm feeding her, she tends to fall asleep against me. She at least stats really well when that happens!
Update 8/5: Annalucia is down to 3.5 liters of pressure! She's also up to 53 ml of food every three hours. She keeps desatting though, a lot in a day. The other day when I was visiting, her oxygen went down to 24, and she was having a hard time getting back up to where she needed to be. After a while, with the nurse helping her, she finally became stable. Even though I know she is doing loads better than when she started out, it's always very unnerving and overwhelming when this happens, especially when it seemed like she was ready to move on to the next step.
Her incubator was at its lowest yet, 28.3 C. Getting closer to the 28C it needs to be for her to move to an open crib!
The doctor told me that this coming week I should be able to start breastfeeding!! Lets pray she will be able to handle that well.
Her color is looking so great. It's pretty close to my color actually! Oh, and she's had about two different eye exams within this last month, and both have been really good! When a baby is on a lot of oxygen, especially starting out at such an early age, a lot of times their eyes can start to go blind. Thankfully, if it's caught early enough, it's fixable. The doctor was really impressed with her eyes, saying he was shocked they were as good as they were :)
Her incubator was at its lowest yet, 28.3 C. Getting closer to the 28C it needs to be for her to move to an open crib!
The doctor told me that this coming week I should be able to start breastfeeding!! Lets pray she will be able to handle that well.
Her color is looking so great. It's pretty close to my color actually! Oh, and she's had about two different eye exams within this last month, and both have been really good! When a baby is on a lot of oxygen, especially starting out at such an early age, a lot of times their eyes can start to go blind. Thankfully, if it's caught early enough, it's fixable. The doctor was really impressed with her eyes, saying he was shocked they were as good as they were :)
Update 8/1: Annalucia needed to get another blood transfusion because she was anemic, which has been causing her to desat more, work harder, and be more sluggish. This is her third transfussion needed. Yesterday she got the blood and she has been doing a lot better! Today they put her liters of pressure to 4, down from 5! For the most part she has been handling that well, although when we were visiting her today she kept desatting her oxygen down to the 40's and 50s, and she kept holding her breath. But both Jon and I held her and she couldn't stop smiling! Her weight is continuing to go up, nearing 5 pounds! The temperature of her incubator has been fluctuating, but right now it is at 28.4 C. Hopefully she'll handle that well and it can get closer to the 28 C she'll need to move to a crib!
Update 8/1: We had a baby shower for Annalucia on sunday. I had such a great time! We had it set up more as a bbq with all of our family and friends, but near the middle we had a few games. The day started our rainy, so I was worried that by party time it'd still be raining, but thankfully it cleared up and turned into a beautiful day! So many people came from out of town and hung out for hours. It was really great!
We ended up getting some pretty awesome stuff as well! I was able to set up her nursery a little more with the stuff we got!
We ended up getting some pretty awesome stuff as well! I was able to set up her nursery a little more with the stuff we got!
Happy Baby!
Update 7/27: Annalucia is much the same as she had been since she arrived in Neenah! She's growing extremely well, like she's hit a growth spurt. She's still on 6 liters of the humidity, so no breastfeeding yet! :( She desatts with her oxygen quite often, but thankfully not really with her heart rate. Actually, both last night and today she kept desatting, then she had a giant poop, and ended up statting beautifully :)
She's up to 36 ml during her feedings.
She also doesn't stay on room air as often as she did on her last canula, but it'll just take a little longer for her to get used to the change. Just her growing each day will help so much!
Also, I'm pretty sure she's going to be a brown eyed girl...:)
I held her today and she stared into my eyes for the longest time. Even after I adjusted her she kept staring!
She's up to 36 ml during her feedings.
She also doesn't stay on room air as often as she did on her last canula, but it'll just take a little longer for her to get used to the change. Just her growing each day will help so much!
Also, I'm pretty sure she's going to be a brown eyed girl...:)
I held her today and she stared into my eyes for the longest time. Even after I adjusted her she kept staring!
Update 7/22 (Sunday): So much has happened in the last few days! Last thursday I had asked the doctors/nurses whether the hospital in Neenah has what Annalucia needs and whether our insurance would cover it. They made a call that morning and were told right away that yes, they have everything she needs, and yes, it'll be covered. Then they asked when should they send the ambulance! So it was decided that she'd be transferred the next morning. I had to go back to the Ronald Mcdonald house and pack up my belongings (took 5 trips back and forth!), then came back to the hospital and stayed the night with Annalucia. She woke me up with the angriest cry ever! I got up and she was on her back, obviously not liking it, because the nurse came in and flipped her to her stomach and she was instantly better.
So the next morning came round and the people from the hospital came and got Annalucia settled into her new incubator. It was so sad leaving the place and the people I came to know so well over the last two months!
I got to the hospital back home and boy it was different! It was set up completely different. The NICU at Meriter had private rooms, the NICU in Neenah has a few different rooms with about 5 babies in each, and curtains to make each part more private. Each room also has a specific theme (balloons, under the sea, and some others) with beautiful murals all over the walls. It's pretty neat being able to see and talk to other families that are going through the same things as we are.
For the first two days she's here she'll need to be in "isolation" because of some virus or something that is possible with transferred kids. It takes about two days for the results to come back. During those two days everyone needs to wear gloves and a isolation gown, which kinda sucks because I can't touch her skin or do K-Care.
So yesterday (Saturday) I wasn't able to get to see her till really late, and when I got to see her the nurse told me of all these changes that had happened. She's completely off her rate for one! And today she's gonna be put on Vapotherm, which is pretty much a high flow nasal canula, that gives a steady flow of pressured humidity into her air sacks to keep them from collapsing and causing extra stress. She's starting off at 6 Liters of flow. She's not getting anything to help her breathe, meaning no added breaths per minute! Whoooo! That's a huge step :) Also, her incubator temp was put down to 28.5 C, and it needs to be down to 28 C in order for her to be put into a crib. So close!!! She was also wearing the Preemie sized onesie and pants that Kristen and Jeff Belland got her, and it FIT! Well, the pants were too long and the feet too large, but the onesie fit beautifully! She's progressing so well and gaining weight! Both Jon and I got to hold her last night and she smiled SO much! It was so wonderful to see...:)
Life is seeming more normal now that we're back home and our little family is so close together...and being able to see that the time is getting closer for her to come home is making me get so many butterflies in my stomach...:)
So the next morning came round and the people from the hospital came and got Annalucia settled into her new incubator. It was so sad leaving the place and the people I came to know so well over the last two months!
I got to the hospital back home and boy it was different! It was set up completely different. The NICU at Meriter had private rooms, the NICU in Neenah has a few different rooms with about 5 babies in each, and curtains to make each part more private. Each room also has a specific theme (balloons, under the sea, and some others) with beautiful murals all over the walls. It's pretty neat being able to see and talk to other families that are going through the same things as we are.
For the first two days she's here she'll need to be in "isolation" because of some virus or something that is possible with transferred kids. It takes about two days for the results to come back. During those two days everyone needs to wear gloves and a isolation gown, which kinda sucks because I can't touch her skin or do K-Care.
So yesterday (Saturday) I wasn't able to get to see her till really late, and when I got to see her the nurse told me of all these changes that had happened. She's completely off her rate for one! And today she's gonna be put on Vapotherm, which is pretty much a high flow nasal canula, that gives a steady flow of pressured humidity into her air sacks to keep them from collapsing and causing extra stress. She's starting off at 6 Liters of flow. She's not getting anything to help her breathe, meaning no added breaths per minute! Whoooo! That's a huge step :) Also, her incubator temp was put down to 28.5 C, and it needs to be down to 28 C in order for her to be put into a crib. So close!!! She was also wearing the Preemie sized onesie and pants that Kristen and Jeff Belland got her, and it FIT! Well, the pants were too long and the feet too large, but the onesie fit beautifully! She's progressing so well and gaining weight! Both Jon and I got to hold her last night and she smiled SO much! It was so wonderful to see...:)
Life is seeming more normal now that we're back home and our little family is so close together...and being able to see that the time is getting closer for her to come home is making me get so many butterflies in my stomach...:)
Update 7/18: Annalucia has been doing so well since getting her breathing tube taken out (referring to my other entries in "Updates on Complications)!! She's been on 21% (room air, what you and I breathe) for the past day and night. They're also decreasing the pressure being given to her to support each breath, and also the amount of breaths the machine is giving her. I mentioned to the nurse how funny it was that she's doing even better than before the intubation happened, and she said it was a "miraculous recovery". I can't help agreeing......especially knowing how many people were praying when this all happened! Thank you, thank you for all the prayers and support!
Update 7/16: Breathing tube taken out! They would have taken it out sooner, but wanted to make sure the swelling wouldn't happen again. Scary thing is, they still don't know what caused it! She's stable and doing well :)
Update 7/15: Its been a long weekend! On Saturday Annalucia had to get a new IV put in her foot and the one in her arm taken out. It was so horrible to watch because she was in so much pain. Her heart rate was really high because she cried and cried, and all with no sound because of the breathing tube. Her arm was covered with tape that just wouldn't come off, and then the actual IV was taken out, so she probably cried close to 30 minutes. All I wanted to do was hold her, and let her know why she needed this stuff done and why I couldn't be with her all the time, but there's no way to convey to a baby why they need to go through this type of thing. A few hours after that the nurse let me kangaroo care her, so that was really nice.
Since she got the breathing tube put in she's lost a little bit of weight, but nothing too big.
Since she got the breathing tube put in she's lost a little bit of weight, but nothing too big.
Update 7/13: Thank you everyone for your prayers!! They had to call an ENT (ear, nose, throat specialist) doctor from the UW hospital, and when he got here he was able to put the tube in since the swelling had went down. He was pretty surprised about that! I know it was the prayers from everyone that helped that happen! Annalucia had an eye exam yesterday and the doctors think that might have been what sent her over the edge. Her heart rate and oxygen dropped so low last night that they had to do CPR on her....as of right now she is stable and they'll be keeping the tube in till monday, giving her time to rest and recover. She's not completely out of harms way yet, so they'll be keeping a close watch on her.
She was switched over to this open crib with a top heater so she could be more accessible to what the doctors and nurses needed to do. Sadly, she's not quite ready to stay in one of those! The incubator is back in the room now.
She was switched over to this open crib with a top heater so she could be more accessible to what the doctors and nurses needed to do. Sadly, she's not quite ready to stay in one of those! The incubator is back in the room now.
Update 7/13: Please pray for Annalucia!! The hospital called Jon and I (I went to Appleton for the night) around 4 this morning to tell us that Annalucia has been having so many spells the nurse hasn't been able to leave the room, and her heart rate has been dipping really low with her looking pale. They decided to intubate her, and when they tried to get the tube in they found they couldn't because her neck was swollen. They called again around 7 to let us know about her neck, so at that point they had been trying for a few hours to get the tube in, but couldn't because of how swollen it was. They're talking about maybe having to do a tracheotomy, making a hole in her neck to put the breathing tube in that way ....I don't know for sure the details, but Jon and I are heading down now and will get more information when we're there. But please pray for her!!
Update 7/11: The only thing that's really changed is her temperature, which wasn't staying as high as they wanted. They adjusted the temperature of the incubator so she wouldn't have to burn as many calories keeping warm. This isn't a big deal, just something that will improve with her weight gain!
Update 7/11: I've always wondered how it would feel to have a child, what that love would feel like. Each day my love for her gets even stronger than the day before, I can sit next to her incubator and just stare in at her for the longest time while she sleeps. When I go to Appleton or elsewhere for the night, I feel like a huge part of me is missing, and I am aching to be next to her again.
Yesterday I was able to hold her for over 2 hours with her statting really well the majority of the time! Closer to the end of my hold she got really squirmy and pushed herself up right under my chin, probably about 3 or 4 inches of a move there!
In this picture she had moved up, and over from her bed and was able to touch the "door". Needless to say she needed to be repositioned :)
Annalucia is digesting her food really well, and they went up to 30 ml every 3 hours (1 oz).
Yesterday I was able to hold her for over 2 hours with her statting really well the majority of the time! Closer to the end of my hold she got really squirmy and pushed herself up right under my chin, probably about 3 or 4 inches of a move there!
In this picture she had moved up, and over from her bed and was able to touch the "door". Needless to say she needed to be repositioned :)
Annalucia is digesting her food really well, and they went up to 30 ml every 3 hours (1 oz).
Update 7/9: The doctors did an echo on Annalucia's heart to make sure that her heart wasn't what was causing her so many desats. They found that her PDA has opened up again, but the doctors aren't concerned since it's so small. Her VSD is the same as before. They started her on a feeding pump, which gives her 28 ml of Hind milk over the course of two hours, then she gets an hour break, and gets fed again. Using the feeding pump has very much helped her desats, and she's had less reflux (which is a frequent problem with preemies). So doing that, and putting her back to where she was before they tried weaning has helped her. Looks like she's just not ready to get weaned down!
I was holding her today and her heart rate dipped down to 60, when it's normally around 160-190, so that was a little scary. The nurse had to quickly shift her and prod her a bit and it went back up.
I was holding her today and her heart rate dipped down to 60, when it's normally around 160-190, so that was a little scary. The nurse had to quickly shift her and prod her a bit and it went back up.
7/9: Last night I had some crazy dreams and they all had to do with Annalucia. In one of them I was able to crawl into the incubator and sit quite comfortably and just hold Annalucia without any worry that I was going to be too rough on her tiny, fragile body.This dream went on for so long and was so vivid that when I got to the hospital I was confused that the incubator was so small! There were a number of others but this was the most interesting to me...:)
Update 7/7: The doctors have been trying to wean Annalucia off her rate (breath's per minute) and PIP (peak inspiratory pressure), but so far it's not working as well as they want. They had her weaned down a bit for a couple of days but she kept de-satting and really not doing well, so they had to put her back up.
She's still being very active and alert, and loves to stare around and loves to pick her head up and re position it at an awkward angle! The nurses actually came in a couple of times today to find her completely off her little "nest" in the incubator and up against the glass wall! Apparently she can't stay still :)
She's still being very active and alert, and loves to stare around and loves to pick her head up and re position it at an awkward angle! The nurses actually came in a couple of times today to find her completely off her little "nest" in the incubator and up against the glass wall! Apparently she can't stay still :)
7/6: Daddy got to do kangaroo care!
Update 7/4: I'm so, so, so happy to say that Annalucia is up to 3 pounds!!
A few days ago the doctors told me that the second part of my milk is where the most fat is, so I should stop pumping part way through, put that milk into a different container, and then the rest of the milk (called Hind milk) is what will be given to Annalucia. Both parts have the same amount of protein and good stuff, but the second has more fat. Similar to skim milk and cream ;) Anyway, giving her the Hind milk seems to be helping! She is now taking 26 ml every 3 hours.
Tonight I helped with her cares (changing her diaper, taking her temperature, giving her food through her feeding tube, checking her lungs, taking her blood pressure) and changed her diaper THREE times in a row! She kept pooping after clean ones were put on! She was awake and seemed to enjoy most of what went on.
A few days ago the doctors told me that the second part of my milk is where the most fat is, so I should stop pumping part way through, put that milk into a different container, and then the rest of the milk (called Hind milk) is what will be given to Annalucia. Both parts have the same amount of protein and good stuff, but the second has more fat. Similar to skim milk and cream ;) Anyway, giving her the Hind milk seems to be helping! She is now taking 26 ml every 3 hours.
Tonight I helped with her cares (changing her diaper, taking her temperature, giving her food through her feeding tube, checking her lungs, taking her blood pressure) and changed her diaper THREE times in a row! She kept pooping after clean ones were put on! She was awake and seemed to enjoy most of what went on.
Update 7/2: Annalucia's main issue right now is the fact that she's not gaining as much weight as they want her to. She keeps gaining some, then losing some, and it keeps going like that. At this point in her stay she should have gained a good amount more than she has. She has been having a lot of spells still, with her oxygen dipping down often. Her heart rate is still too high as well. It should be around the 150s and 160s, instead it's regularly at least in the high 170s, but generally higher, and in the 200s when she gets upset. Some of these spells should be fixed by her gaining weight and getting stronger. Some are caused by her VSD, and the extra fluid that is getting passed around or through the lungs. They're talking about maybe putting her back on diuretics, which has its own issues, but will help in some ways, hopefully at least till she's gained some extra weight. They really would like to wait to do surgery on her heart till she gets stronger, since it would have to be an open heart surgery...her heart is just so tiny right now. So pray the hole starts causing her less problems and pray she grows fast.
Update 6/28: Yesterday I was able to give Annalucia a bath! It might sound weird, but that's one thing I've been really looking forward to. We put a little mixing type bowl into the incubator full of warm water and placed her onto a waterproof sheet, then took all the cords off of her, minus her nasal canula. I wiped off her face, then washed her hair, then placed her into the bowl and washed the rest of her. She did really well :) Afterwards we quickly wrapped her in a towel to get her warm again, dried her off, then got the incubator set up and got her settled. It was so wonderful! She was wide awake and just staring right at me.
She is also now taking 19 ml of breast milk and is off the liquid protein stuff, so they were able to take out her picc line. It was really hard to watch them do that though, because of how sticky the tape was. She kept crying and even with my hands on her she was still really upset. In addition to the milk they are adding a powder that has extra calories.
Arian, Karen, and the boys came for a visit yesterday, along with Brendan and Elise. I had to take them back in two groups. Annalucia was awake and just staring around, yawning a whole lot, and just looking cute :) She seemed to handle all the visitors just fine!
Oh! And the day before I was able to do kangaroo care again :) My second time doing that. She started out awake, then drifted off. I got to hold her for about an hour. I almost fell asleep myself!
She's been smiling a lot for a while now! I'd like to believe it's because she's happy, not gas! It was really neat, because I started singing to her and right away she got a big smile on her face :)
She is also now taking 19 ml of breast milk and is off the liquid protein stuff, so they were able to take out her picc line. It was really hard to watch them do that though, because of how sticky the tape was. She kept crying and even with my hands on her she was still really upset. In addition to the milk they are adding a powder that has extra calories.
Arian, Karen, and the boys came for a visit yesterday, along with Brendan and Elise. I had to take them back in two groups. Annalucia was awake and just staring around, yawning a whole lot, and just looking cute :) She seemed to handle all the visitors just fine!
Oh! And the day before I was able to do kangaroo care again :) My second time doing that. She started out awake, then drifted off. I got to hold her for about an hour. I almost fell asleep myself!
She's been smiling a lot for a while now! I'd like to believe it's because she's happy, not gas! It was really neat, because I started singing to her and right away she got a big smile on her face :)
Update 6/24: Annalucia got an echo last thursday to find out if the medication was still helping, and we found out on friday her PDA was completely CLOSED! That, and her VSD was smaller! Thank God! The last few days she has been doing really well. She still has had some spells, but nothing too terrible. Her weight is continuing to go up, and that is one of the best feelings!
Update 6/24: Annalucia is now getting 12 ml of breast milk every three hours, instead of 2 ml every one to two hours :) Still just through her feeding tube, but eventually through her mouth!
Update 6/22:
Well, Annalucia is officially a little Orthodox baby :) My dad gave her the short version of a baptism while Jon held her tonight. This was the first time Jon could really hold her. He got to hold her for less than a minute in a transfer back to her incubator a few weeks ago, but this time was roughly an hour. She was able to be out of the incubator for about 2 hours, and she did great. Her stats, for the most part, remained really good all evening. She kept opening her eyes and staring up at Jon. She'll still have the rest of the baptism service, but that will wait until she's out. It was a really wonderful evening!
Update 6/20: I've been at the hospital most of today and yesterday. What's really great is that I get to sleep in Annalucia's room on a pullout couch if I want to stay overnight. I did that the other day and was able to stay that whole night and most of the next day. She was doing really well, it's like she could sense that I was there with her that whole time :) I think It's starting to sink in a bit more that I'm a mom. I can't be away from her long, I physically and emotionally can't. I've been able to be with her every day since she was born, although there was one day I couldn't see her, and I nearly went crazy. I missed her so bad, and got really jittery, and I kept snapping at Jon over stupid things, or would go into a depressed state at the drop of a hat. So yeah, no more staying away for a whole day! Tomorrow I'll be going to Appleton for a visit, as well as getting bills dealt with. Then on friday Jon will be coming here to Madison. I'm hoping he'll get to hold her for a good amount of time. He got to hold her once, but it was only for about a minute while a transfer was being done.
Update 6/18: Another echo, the PDA has gotten the tiniest bit smaller, but they need to be careful with the medicine they're giving because it's hard on a baby's kidneys. They had to take a break from it to give her kidneys time to heal back up, but they're doing better now so they're wanting to put her back on it, although a smaller dose.
Update 6/18: I got to hold Annalucia for the second time the other day! The nurses had to change out the incubator, so they let me hold her during that time. As amazing as it was to hold her the first time, this time I was able to actually able to look right down at her face, and that was incredible. The first time was skin to skin, so I couldn't actually see her, mainly feel her. Annalucia had her eyes open the majority of the time I held her. Her eyes are still at the point of having a hard time focusing, but there were a number of times that she focused right on me and held the gaze! It was wonderful :) I was able to keep talking to her and let her know I was there for her. Her stats went up as well!
Update 6/15: The doctors did another echo on Annalucia's heart to find out if the indomethacin was helping her PDA, and sure enough, it went from a large hole to a moderate hole! Pray it keeps working!
Update 6/14: Annalucia had an echo done on her heart to find out how the two holes were doing. The hole in the upper part of her heart should be able to close on its own, however, the echo showed that it has gotten a little bigger. The lower hole is still the same. Just found out that they are going to start her on indomethacin tonight, which will hopefully treat it a bit faster. If that doesn't work they may have to do surgery on it, since that hole is causing more trouble than her VSD. Her VSD is not actually causing her as much of a problem (it still is one, but not as bad as the PDA), and they have high hopes that as she gets bigger the hole will just stay the same size and she may not need surgery for that one! So, pretty much it's a wait and see thing.
Update from Jon 6/13: Hi everyone, we are in the Ronald McDonald House now and we feel as lost and as stressed as ever. It is hard now that we aren't even in the same building as Annalucia. Yes, we're not far, but it is hard to get used to not having her an elevator ride away. We got to hold her today for the very first time and made our hearts melt. When the nurse handed Annalucia to me, it was so scary and exciting! I felt so amazed to know that I was holding my daughter, no other feeling can top the way I felt when I first held her. The next 3-4 months are going to be that much harder now that we have held her. All we want to do is be able to take her home and be a family. Thank you for all your prayers and support in this difficult time. Love Jon, Ari and Annalucia ♥
Update 6/12: Annalucia got a fever tonight which lasted for a little while. Her oxygen level should be in the 90's, and it had dropped all the way down to 9 before going back up. She's stable now but it was really scary to see. She kept crying, but with the breathing tube in her throat you couldn't actually hear anything. They took an Xray as well as cultures and other things to make sure she didn't have an infection (she didn't), and to make sure her lung hadn't collapsed (thank God it hadn't). What seems to have happened was that her breathing tube was too low, which caused her to be distressed. Because she's so little, the distress caused her body temperature to rise. Her oxygen level had dropped because the tube was too low and was only working on one of her lungs. They pulled it out about half a centimeter and it fixed it. Her stats are back to normal now and she sleeping peacefully :)
UPDATE 6/10 : Annalucia has been having a lot of apnea episodes these last few days, and has been having a harder and harder time remembering to breathe. They decided that they would put back her breathing tube back in so she wouldn't be using up so much energy trying to remember to breathe. As scary as it is, apnea in a preemie is very common, since being in the womb they would have no reason to have to breathe.
UPDATE (June 6, 2012): Annalucia is 1 week old. The doctors have given us some new information about some complications that are going on with Annalucia. She has 2 holes in her heart. One of them is a smaller one between the upper chambers of the heart, the atria. It is pretty normal to have this one, and they think it will close on its own. The one that is concerning them is the one between the 2 lower chambers of the heart, the ventricles. It is a larger hole than normal. There is way more blood being pushed from one ventricle to the other without actually going by the lungs to get oxygen in the blood than should be. This has caused her to develop congestive heart failure which is causing fluid to build up around the lungs and make her hands and feet swell. She has fluid overload. She is also anemic. They had to give her a blood transfusion which only increased the fluid so now they have to give her diuretics to help her reduce the fluid in her body. The problem with that is when she loses the fluid, she also loses her potassium and sodium so they will have to watch her electrolytes very closely. Right now they are playing a balancing act to try avoid heart surgery and to try to get her older and bigger. The problem is some of these things can cause her to not grow.
She also weighed less at birth than what the scale said because of the magnesium that Ariadne was given. It causes both the baby and mother to have too much water weight. Annalucia weighed 1 pound 14 ounces on Tuesday and was about 1/3 of an ounce over that on Wednesday.
She also weighed less at birth than what the scale said because of the magnesium that Ariadne was given. It causes both the baby and mother to have too much water weight. Annalucia weighed 1 pound 14 ounces on Tuesday and was about 1/3 of an ounce over that on Wednesday.
Update 6/6: So Jon and I like to put our hands in the incubator to touch Annalucia, or hold her hand. When I hold her hand she pretty much keeps her hand loose. When Jon takes her hand she right away starts holding on so tight her fingers go a little white, and she won't let go no matter what! :) She already loves her daddy like crazy!
Update 6/5: Annalucia will not be able to be transferred to Appleton or Neenah because our insurance won't cover it. Annalucia apparently didn't weigh enough at birth. She weighed 2lb 6oz when born, she would of had to be 3lb 4oz in order to be covered by our insurance. It costs roughly $10,000 to transfer her if we would do it out of pocket. That includes prep time, driving time and the time it would take to get her situated in whatever hospital she would go to. We can't cover that, so she will be staying in Madison for the next 3-4 months :(
Update from Ariadne 5/31: I still can't quite believe that this is all happening. Who would have thought that we'd have a beautiful baby girl, one minute in my stomach, the next trying her hardest to be born, months ahead of her time! Its been such a crazy few days, full of so much emotion, both good and bad. Thank you everyone for all the prayers and support you have given us. No matter how scared we were, we knew Annalucia would be okay, too many people were praying for us for it to be any different.