Acid Reflux and Apnea

So Avalon is 4 weeks old now. She doesn't have her nasal cannula anymore nor does she have a feeding tube. YAY! She is up to 4 lbs 11 oz. :) I honestly thought she'd be home by now. The sad fact is that she would be home by now if she could just get over her apnea spells. She is now on all food by mouth, either from me or bottles so that's great. For NICU babies that's typically the biggest hurdle. Unfortunately for her it's her apnea. Her team of doctors believes that its her acid reflux that is causing her to protect her airway (which is good for her to do) which then though causes her not to breathe and go into the apnea and have her oxygen saturation drop too low. MOST of her spells she gets out of on her own without any help. But she is still having 1-2 a day that require stimulation or the oxygen mask to get her out of it. She has to go 7 days without any apnea in order to go home.
She is on prilosec for her reflux but it doesn't seem to be making very much of a difference. The doctors wanted to start her on thickened feeds through her bottles but I didn't want them to. All my instincts told me that would make things much worse especially in the long run. The developmental specialist agreed with me, thank goodness. So I met with the whole team this morning and asked if we could try having her on her stomach after feeds for a bit as that helped a lot with Autumn. They agreed to try that first. So for the next 48 hours we will try that with her on an incline as well and see if that makes a difference. I really think it will. If it doesn't then our next step is to decrease the amount of calorie fortification that is going in her bottles to see if that helps her. Since she often does better after breastfeeding from me than when she has a bottle of breastmilk with the added fortifier in it. They don't really want to do this because they want her to keep gaining weight well but I think she will just fine with strait breastmilk. If that doesn't help then we will try an antibiotic called arithromiocin (don't know how to spell that) that actually causes the GI tract to empty a bit more quickly which could help her not to reflux as much. If all those things fail THEN we will try thickened feeds. Hopefully at least one of those things will work first.
So that's our plan for now. Fingers crossed that she will have huge improvement in the coming week and we can take her home!
Here are a bunch of pictures to enjoy!

The last couple of weeks

I haven't updated in a little while. Sorry about that. Life is pretty hectic.

Avalon is doing quite well. Last week she had a bit of a rough week, as did I. I came down with a horrible virus that made me throw up and have more diarrhea than I've ever had in my life. It was horrible. I got so weak that Tyler had to carry me anywhere I needed to go. Luckily it was only bad for two days. I had to stay away from Avalon though and that was so hard. She was a bit sick as well, though nothing like me thank goodness. She didn't eat well for the week and had to be fed mostly through her G Tube.

She has now graduated up to stage 3 feeding! YAY! This means she has 6 out of 8 of her feedings BY MOUTH. Either by breast or bottle. The other two go in her feeding tube. She is still getting used to the change and is often too sleepy to take all 3 bottles during the night but she always takes the breast and does great. I love that she does so well at breastfeeding. I have been able to work it out the last couple of days to feed her three times a day. It's been nice to spend some extra time with her. I hope I can keep doing it until she can come home. She needs to take all 6 feedings completely for 2 days in order to be upped to stage 4 which is all food by mouth. Then she can get her feeding tube out after 2 more days of that!

She still has the nasal canula for oxygen flow. It is set on room air percentage but the flow helps her to remember to breathe. She is still having several ABD spells and several desaturations. She mostly recovers from these on her own but sometimes requires stimulation to get over them. I think it will just take some more time for her brain and body to learn better what it needs to do. Poor little thing.

The doctors and nurses think that perhaps her acid reflux is causing some of the spells and so they put her on a 5 day trial of Prilosec to see if that will help. If it makes a difference they will keep her on it, if it doesn't then they will stop it as it can inhibit some vitamin absorption. Hopefully it helps.

Her Vitamin D came back low so they have also upped her vitamin supplements to combat that. I've also started an extra Vitamin D supplement in the hopes that that will help her as well.

Today she was having a lot of desats and not recovering as well on her own. She had 7 spells in an hour which is WAY more than is normal for her and to the point where the nurses were getting very concerned. So they called in the resperitory specialist to check on her. After listening to her lungs while the nurses turned up the flow of oxygen she discovered that it was not getting through to her lungs. Her canula was clear so they sucked out her nose. Low and behold they sucked out a ton of junk and she has been doing great ever since! She was just stuffy! I'm so glad it wasn't something worse! So from now on if she starts acting that way again they will first check her nose! Silly baby.

She is so sweet and definitely knows her Mama. It warms my heart to know she does better with me and waits for me and is always eager for more Mommy time :) It's something I really need!

Growing and growing

Avalon is still making milestones :) The last couple of days were a bit hard on me. She got moved from her issolette into an open cot, which is fantastic. She is maintaining her own temperature perfectly. But with the change she has been sooo sleepy. For the last couple of days she wouldn't nurse or take a bottle. But tonight she was finally awake and hungry again and nursed super well thank goodness! I am so glad!
She is also off of the caffeine now. They took her off of it a week earlier than they had initially planned, so that's great. She seems to be doing well so far. She is still having some apnea and bracycardia of course but the spells are all self resolved, which is great. Hopefully they keep decreasing. I just can't wait to have her home with us! I have to keep reminding myself one day at a time, one day at a time, one day at a time.

Slowly but surely

Avalon continues to make progress. I find myself becoming very impatient and have to remind myself that she is still so little and still has a ways to go before she can come home and that she is doing so much better than anyone expected.

She is up to full amount on her feeds. She has 4 tube feeds and 4 oral feeds a day. Two of those are breastfeeding and two are bottle. I wish I could nurse her every single time, but it's just really not possible to drive over there that much and to leave my other girls. I'm glad she is at least getting only my milk.

Exclusively pumping has been interesting. I'm so grateful that I already knew how to pump and the mechanics of it and how to have it be the most productive. I'm currently getting at very least 2 ounces per side but typically 2.5-3 per side. I'm so grateful to be blessed with a lot of milk. It's such a huge deal for Avalon to get it. The NICU staff has had to start freezing all I bring in because there's too much haha. I cannot wait until I get to feed Avalon exclusively and not pump any more. I am also so grateful that my insurance has covered the cost of a hospital pump rental for 2 months which will get us through her NICU stay. It makes a huge difference.

I do feel a bit like a zombie. I pump every 2 hours during the day and every 3 at night, with one 4 hour stretch. It takes me a good 30 minutes each time so I'm definitely not getting as much sleep. But it's completely worth it. I've never considered for the slightest moment not doing it. To me there is no choice.

Avalon is still having a few apnea and bracycardia spells each day. They are decreasing overall since birth, but still there. I hope she grows out of them very quickly.

She absolutely loves breastfeeding and is always so content after I feed her. It melts my heart. When I talk to her she tries so hard to open her eyes and look at me, even if she's too tired to do so. When she is alert she just stares and stares at me. I love getting to snuggle her and talk to her and kiss her little head. She responds to me SO much that it just fills my heart with joy and shows me what a huge miracle being a mother is. And what a miracle this little girl is that I've been given. She makes our family feel complete and whole. It breaks my heart that her sisters have not been able to see her. Since it is RSV season they are not allowed in the NICU. I can only hope that Avalon gets to come home soon and be with them.

The next goal with Avalon is to have the IV out. Hopefully within 2 days it will be gone. Probably no longer than 3. And once that is gone we can start dressing her (I won't do too much because it's not really necessary at this point). Then we start working on weaning her off the temperature controlled issolette and having her maintain her own temperature. Once she does that she can be in an open bed. Those are the most immediate goals for now and what I will concentrate on.

I'm still working on crocheting her a blanket. It helps keep me calm and sane and pass the time. My girls help a lot with that too. Oh how grateful I am for them and their snuggles!

Avalon 3/31

Avalon is doing great still today. :) I suppose these updates will get boring! But that's what we want right? Everything to be normal and great :)
She fed great this morning and they told me I could probably start feeding her 4 times a day! They also said she could maybe even start having bottles sometimes instead of the feeding tube. When I went in to feed her tonight the director of infant development came in to watch her nurse. She said she has NEVER seen a 32 weeker eat as well as Avalon. She said her patterns are that of a full term baby. And, this part made me glow with pride, she said a huge part of the reason she does so well is because I position her so perfectly and know how to do what she needs and I read her signs really well. Ah go me! Hahaha. I am very proud of my self and that I can do something to help my daughter!
The doctor said we can definitely start trying to bottle as well. Of my milk of course. I think she'll be happier with a bottle than tube feeds. And of course Breastfeeding as much as I can get there. Daddy is going to give her her first bottle tomorrow morning! They will see how she does. The nurse that will help is one of our preferred nurses. Her theory is that it will make Avalon mad because she'll love it but won't get as much milk as nursing and want more haha. She really is a little spitfire. All the nurses are just amazed by her. As are we!
Oh and she has the nasal canula which was on just for a bit of flow of oxygen, off now. She is much happier without it on. She will probably get her IV out in the next day or so, depending on how much she gets with feeds. She'll love not having to have that anymore.
I just keep hoping things go this smoothly! I don't even know how to handle discouragement because she's pretty much only had positive things happen!
We always appreciate more prayers!

Avalon 3/29

I went and fed Avalon at 5 today. She did really well. I had several letdowns and she was able to keep up with them for the most part. A couple times she forgot to keep breathing because she was sucking so much but she is learning better how it all works every time I feed her. She totally gets milk drunk and is very, very content after getting to nurse.

She got to meet two of her uncles and one aunt today :) Although she slept through it all since she had just nursed haha. It was fun to show her off and talk about her.

She will be on caffeine for 2 weeks to help with the apnea spells but she pretty much only gets them when she's agitated. We found that she does much better if she is swaddled so she gets to be wrapped up now. It helps keep her calm. She still loves the binki but gets mad sometimes because she's starting to associate sucking with getting to nurse and nothing comes from the binki. She really just wants to eat all the time. Like a full term baby haha.

She will get off the oxygen tonight. They have it set on room air anyway just to have it on her for a bit of extra air flow and stimulation. But she'll be happy to have the canula off again.

They will stop the IV fluids sometime tomorrow or the next day so she won't have to have the IV anymore. At that point she'll probably get to move to an open bed instead of the isolette. Each step she makes is thrilling!

If she continues to do well with feeds (which I'm sure she will) then I'll get to feed her 4 times a day. If I can make it over there that often. As she continues to improve they will have to do some bottle feeding (of my milk) simply because I can't come to her for every single feeding. I don't like it but I don't really have a choice with that! I'm lucky I'll get to manage going 4 times.

Hopefully she does great tonight! Keep the prayers coming!

Avalon's Birth Story!

Sorry it has taken me sooooo long to post! It's just been crazy and I've been exhausted. I'm home now, which has things settled down. Ok first I will tell my labor story. (I am pumping while I write this haha)

So as you know I went in on Sunday with contractions and more mucus plug lost. They put me on a huge dose of something...can't remember what...to try to stop my labor. An hour later my water broke. They stopped the one medicine and started Magnesium in order to help develop the baby's nervous system. The mag helped slow down the contractions as well. The mag was the worst thing I've ever had. So awful. I also got the first dose of betamethadone (steroid to develop baby's lungs) Which burns and hurts like a mother just an fyi haha.

The contractions didn't stop but settled down and weren't painful. So the next morning they moved me up to antinatal ward to just try to keep her in as long as possible. I was put on every cocktail of antibiotics that you can imagine. Literally I lost count of them all.

I made it through the first 24 hours and got the second dose of betamethadone. That night my contractions started picking up again so they moved me back down to labor and delivery. Avalon was not tolerating the contractions well, even the small ones. She'd have "late decels" (meaning the placenta was not getting good blood flow) with every contraction. So they kept me on the monitors all night. Eventually the contractions settled down again. (this whole time my contractions never stopped completely.) So they moved me back upstairs.

That night I was getting quite painful contractions. I kept timing them because I thought they'd just stop again like they had kept doing. Finally after 2 hours of them going from every 15 minutes to every 8 then every 5 I finally called the nurse. The baby had a really bad decel with one so they immediately took me back down to labor and delivery. I was very upset to be back down there. The beds are made for labor not sitting there and I was already in so much pain. They kept me on monitors all night again. I was pretty beside myself at this point and just wanted everyone to leave me alone but not leave haha. Baby was still having decels with the contractions but looked great in between contractions so they just kept monitoring her.

The next morning a couple high risk doctors that had been working with me the entire time came in and did an ultrasound just to see how much fluid was there to see if they could do an amniocentises to gauge lung development. But they only found the tiniest pocket of fluid because all the contractions just kept forcing out all the fluid.

After consulting with two other high risk maternal fetal doctors and asking my instinct and gut feeling (which was I felt she needed to be out and would do better out than in at this point) they decided it would be better to deliver her. They said I could start pitocin to get the labor going, even though the greatest possibility was that she wouldn't tolerate labor and I'd have to have an emergency c section. I really had no hope at this point of a vaginal delivery but I was ok with that. I felt so strongly that she needed to come.

They started the pitocin about 9:30 Am. I was already at a 4 but my cervix was only 30% effaced. So I knew I had a ways to go.

The contractions started getting painful and crampy. Baby was still decelling but since they were about 10 minutes apart she was having plenty of time to recover.

Here is now what happened that I think made the amazing vaginal birth possible. An incredible anethesiologist came and talked to me. He was recommending that I get an epidural because that way if I did have to have the emergency c section I would be ready, otherwise I'd have to be put under general anethesia. I agreed I'd much rather have an epidural and be awake during a c section than to keep trying to go unmedicated and have to be put under. He was so sweet and explained everything so well and joked and just made me feel good. He placed the epidural with great care. Then he did something that I think made all the difference. He said that epidurals usually lower blood pressure and since mine already runs really low that he was going to give me a constant small amount of a medicine to raise my blood pressure. It raised it just a bit, to about 110/70 rather than my typical 85/50. As soon as my blood pressure was up The baby stopped having decels every contraction. She was still having them but not every time and not as severe. I was thrilled.

At about 1:30 they checked me again and I was at 5 but still only about 40% effaced. I was very discouraged. I had the epidural super low and I was pretty much feeling everything. Which is what I wanted. It was hard though because I couldn't do any of my normal pain management techniques because I couldn't get out of bed or off the monitors.

Here is where I did something that technically I probably shouldn't have but I'm a firm believer in listening to my body. I KNEW I wasn't dilated enough but I wanted to bear down a bit. There was sooooo much pressure with the contractions. So For a couple contractions in a row (they were every 2-3 minutes by now) I bore down just a little tiny bit. It felt so amazing and right.

Just a few minutes later the contractions suddenly started getting really really intense right down low in the middle. I was trying to tell the nurse how intense it was. She seemed a bit skeptical but asked if I wanted to be checked. I almost told her no because I was sure it was too soon and wrong but I said yes. She checked me during a contraction and I wanted to scream it was soooo much pain/pressure. I was fighting hard not to push. It was soooo intense. At first I thought I was the same because she didn't immediately say something but then when the contraction stopped she said, "Ya you are complete. Don't Push!"

I KNEW listening to my body was the right thing! I'd made it and baby was still tolerating it! They had to literally run my bed back to the OR (I had to deliver there so they could pass Avalon right to the NICU). The short distance was torture. I wanted to push sooooo bad. I just kept breathing through it and trying not to. The two high risk doctors made it just in time but didn't even have time to put gowns on. DH was with me this whole time of course. He had managed to get into his bunny suit. They wouldn't let me mom come in. As soon as they told me it was ok to push she was born. I felt every bit of it. It felt sooooo good to push. I pushed one long slow push and she was born. They let DH cut the cord. They were able to milk it a few times before cutting it. She came out with her eyes open and clenching her fists open and shut and looking around :) She didn't cry. I just got a glimpse of her and they put her through the window into NICU. I only saw that she had some dark hair and I was so shocked and so pleased.

My placenta came shortly after and they saved it for testing. The cord looked good though. They took samples from it as well. To see if they can figure out why I ruptured early.

A nurse came into the room and said, "Her APGAR is 9! She is still just on room air and looking all around!" Both doctors looked at each other and said WOW!

They took me back to my room and DH went to baby. I felt fantastic. I was able to get up right away and pee (such a great feeling haha) which shows I really did feel most everything if I was already able to walk completely on my own.

After a little bit they came in with a cute paper and two of her pictures. I couldn't believe how much dark hair she had and how good she looked! This is that picture:

Then DH came back and took my mom to see her. All the nurses were thrilled to see DH and baby had the exact same nose. They thought it was soooo cute.

They came back with some adorable pictures and the news that she was still just on room air and doing perfect!

They then took me to see her. I couldn't believe how tiny and perfect she looked. And I just couldn't stop stroking her hair. She was already vigorously sucking a pacifier! The nurses just kept laughing and saying, "She thinks she's full term!"



She continued all through the night with only a couple little apnea spells and still no oxygen.

Normally they don't let them start trying to nurse at this age for at very least a week, sometimes two. But by the next day she was wanting to so badly that they let me do some non nutritional latching. So I pumped right before so she wasn't overwhelmed by milk (colostrum which I was already producing quite a bit of) She latched on immediately and kepted sucking! She did back and forth for a good 20 minutes! They nurse just kept shaking her head and laughing, saying it was unheard of.

Warning: Breastfeeding photo to follow

She didn't want to stop! They said she did so well that the next day I could try doing a full feed with her and not pump first. They also doubled the amount she was getting in her tube.

She did great with her first real feed yesterday! Getting several drops of colostrum :) They said I could start feeding her twice a day!

I fed her last night and she did perfect. But she was not happy when I left. She had a bit of a rough night and wouldn't settle down. They said she just wanted to eat. She got upset so much that she had several spells of apnea (Booo!) and they had to put her on just a tiny bit of oxygen which they said they will take off later today, and also gave her a dose of caffiene to help combat the apnea. The nurse this morning finally swaddled her and that has helped keep her calm. She ripped out her feeding tube at one point so I got some cute pictures without it in haha. She hates it so much and would just be happy to get it all from the boob haha.

Today my milk is "in" much more. She nursed super well but I let down several times and each time she'd swallow so much that she'd forget to breathe and have a little spell. Just minor things. We expected it. It will just take her time to learn and grow. She got lots of milk today! After I burped her she konked out completely and was super content when I left. I go back at 5 to feed her again. Hopefully she does better this time and she can go off the caffiene in a couple days.

She is still doing better than anyone ever hoped. I was 32 weeks 0 days when I had her.

I'm hoping this latest development is just a tiny step back and then we will get more steps forward!

I am pumping around the clock and have been able to provide all she needs. I have a hospital grade pump at home to use.

Here are some pictures of my precious angel! She is so so incredible and a little spitfire!