Easter / First Baths

Bert didn't have any meetings this morning which was really nice.  The kids woke up and were excited to see that the Easter Bunny had come and left treats.  Bert and I headed down to the hospital for the 10:30 Cares while Nick stayed with the other kids.  We held the girls and then got them dressed in some preemie gowns that Barbara (a co-worker of Bert's) gave them.  Heather, our nurse, suggested we put them together and take a picture.  I was excited about that so we put Addi in Jordyn's bed and had their very first photo shoot.  Addi wasn't that into it but you can see how different they are when they are right up next to each other.

 Addi on the left and Jordyn on the right.

 

 

Tiff went to Sacrament with us and then we headed home to pack up the boys for their trip to NM tomorrow.  Then we went out to help mom with Easter dinner.  It was delicious!

Since both of the girls are 1500 grams now we can give them a real bath, so Mom and I went down at 10:30 tonight to help with that.  They both really enjoyed it.  Mom and I thought they would cry through the whole thing but they didn't.  It was so fun to be there and learn how to give a preemie a bath!

Addi

Jordyn

Egg Hunts / Addi's Big Day

We had egg hunts at my moms house and also at Peggy's today.  The kids had a great day and the weather was perfect.  In between hunts my mom and I headed down to the hospital to visit Jordyn and Addi.  Addi is doing so great and had a lot of changes happen today.  She got bumped down to 1 liter of oxygen, so she is now off the High Flow machine.  She has been staying around 21% oxygen and doing really well.  Because of the change of oxygen machines, she also got a new, smaller cannula in her nose.  Because of the smaller cannula, she got her feeding tube taken out of her mouth and thread through her nose which clears up her mouth to hopefully start breastfeeding in a day or two.  While I was holding her, Heather came and switched out her bed too.  They like to keep the Giraffe beds (that is what they call the beds they have been in) available in case they have an emergency 25 week baby born.  She is still in an incubator type of bed until she gets to 1800 grams and then she'll be ready to move into something open.  Last night she weighed 1470 which translates to 3 lbs 4 oz.

Addi with her new cannula and feeding tube going into her nose.  It's so nice to see her face without all that tape on it.

Addi's new bed.

Jordyn had a much better day today.  She was still swinging with her oxygen but didn't go lower than the 50's.  They didn't make any changes on her today.  She is still at a 9 PEEP and seems to be doing just fine with that.  Brenda had the girls today and said she was hesitant to do too much with Jordyn since she had had such a bad day yesterday.  I held her tonight and she was perfect for me.  She looked so comfortable and I fell asleep for a few minutes while I was holding her because I was so relaxed.  Last night Jordyn weighed 1530 grams (3 lbs 6 oz).  Now that she is 1500 grams, she is ready to have a real bath instead of just the sponge bath she has been getting every other night.  I'm really excited to help with that!  I was talking to another mom tonight in the NICU about how you have to celebrate all of the little milestones.  Getting a bath is definitely a milestone!

 This is Jordyn all dressed up in a new outfit today.  Her sister had on a matching one and they both looked so cute!  Thanks again Mellie for the cute clothes.

 

 Our nurse, Kim, bought the turquoise and purple blankets for the girls.  She had 25 week twins 12 years ago and so she said she is partial to our girls and loves to take care of them.  Everyone we have met in the NICU has been so nice!  They definitely help make this hard situation a little more bearable.

Vocal Chord

Unfortunately, Jordyn didn't have a very good day today.  She was all over the place with her saturation levels throughout the night and into the morning.  There were also times when her heart rate would drop low too.  Our night nurse, Kim, said that at one point last night she dropped all the way down into the single digits.  The lowest we had ever seen her drop was 30's and it scared Kim really bad.  She's supposed to stay between 88-94 so she was way too low.  Our doctor, Melanie, was very helpful today and really wanted to get to the bottom of it all.  She drew labs to make sure Jordyn didn't have an infection (which thankfully, she doesn't), she suctioned out her nose and the back of her throat, and she turned her peep down from an 11 to a 9 because she thought it might be too much air blowing in and could cause Jordyn to become too anxious and just shut down.  She also inserted another feeding tube into Jordyn's mouth that bypasses the stomach and goes into the small bowel.  This should help with any reflux she might be having.  Because the tube is going into the small bowel she has to have continuous feedings.  She'll be getting the same amount of milk in a 24 hour period as before, but it will be constantly dripping down her tube instead of getting fed every 3 hours.  The ENT finally showed up today to look at Jordyn's vocal chord and determined that the left one is paralyzed.  This is a common side effect of the PDA surgery because they have to move the vocal chord out of the way and it gets stretched out.  50% of kids with the vocal chord paralysis will heal on their own in 3-4 months and it is like it never happened.  40% the right vocal chord will compensate and they will be able to function just fine.  Melanie said it would only effect her singing career because you need both chords to sing.  And then 10% have more severe complications which lead to surgeries and other things.  I was glad that it seems the odds are in our favor.  We will definitely need to work with an Occupation Therapist when it's time to breastfeed because of the paralysis.  I'm hoping and praying they will be able to figure it out soon.  It's so scary to watch her stats drop and her skin get pale and dusty.

Addi is cruising on her High Flow machine.  She is now at 2 liters and is getting 21% oxygen, which is the same as room air.  Melanie said that if she can stay on it for a couple of days then she will be ready to try breastfeeding.  I'm so excited about that!  She will be getting a smaller cannula in her nose and her feeding tube will go through her nose instead of her mouth.  Mom is finally all better and got to go down to the hospital with me tonight.  She held Addi and couldn't believe how different both girls look in just a week and a half.  They are getting to be so big! 

Addi is wearing a Preemie-sized onesie that our neighbor, Mellie, gave us.  It fits her really well!  It was my first time seeing her in clothes.  She looks so cute!  She also looks like she has wide hips :)

I'm a Big Girl Now!

I haven't been as good lately about asking about the girls' weight.  It fluctuates so much and so I don't bother with it every night and I forgot to ask while I was sick.  So today I am very excited to report that both girls are in the 3 lb range now.  Addi is 3 lbs exactly and Jordyn is 3 lb 4 oz.  The nurses measure their length on Sunday's and Addi measured 37 cm, which translates to 14.5 inches.  That is 2 inches longer than when she was born.  Jordyn is 38 cm, 15 inches, and that is also 2 inches longer than at birth.

I held Jordyn twice today and she did so good for me.  Her Saturation level was actually high the whole time and the nurses had to keep coming in and turning her down because she was doing so well.  It's was so nice and made me feel good that she enjoyed her mommy time as much as I did.

Together Again

I was so glad to be able to go visit today!  I hate not seeing the girls or holding them.  I stayed a little longer than I usually do, so I could hold each of them.  Usually mom is there with me and she will hold one while I hold the other, but unfortunately she's been sick since last Wednesday and hasn't been able to go.  She is starting to feel better now and will hopefully be able to go with me again soon.

 Me holding Addi skin-to-skin.  She was so awake for the first half and couldn't decide which direction she wanted her head to face.  She kept lifting it up and switching.  She's got a strong little neck.

There really weren't any changes with the girls today.  The ENT didn't end up coming yesterday or today so we still don't know anything about Jordyn's vocal chord.  He said he will come tomorrow but I'm not holding my breath.  Jordyn's doctor ordered an echo on her heart today because she hasn't had one for so long and she wondered if there would be anything there to explain why she can't stop swinging and why she isn't able to move off the NIPV.  We will find out the results of that echo tomorrow.

This is how I left Jordyn this morning after holding her.  She was all snuggled up with her hands up by her face.  A couple hours after I left I got a text from her nurse, Lori, who asked if she could take a picture of her and send it to me...

She had grabbed the star and was holding it up by her face.  So sweet!

These were the gifts from the Parent Support Group tonight.  There's a onesie, a pair of socks, a burpcloth and some Easter eggs with candy inside.  It's fun to see what the girls are going to get each week.

Sick Again

Addi is still doing well on the High Flow.  They turned her flow up from a 5 to a 6 and that seems to have made all the difference for her.  She doesn't seem tired anymore.  I was going to hold her today but as I was standing by her bed, changing her diaper, I got very light-headed.  I sat down and the nurse brought me some crackers and juice.  I ate them and really hoped I wasn't coming down with something.  I had skipped breakfast this morning and hoped that if I just got some food in me I would be able to hold her.  I didn't feel any better after the crackers so I decided to be safe and not hold her.  I'm so glad I didn't because when I got home I had the chills really bad and had a pretty high fever.  I spent most of the afternoon in bed, sleeping on and off.  I'm feeling a little better tonight and really hoping to be back to normal again tomorrow.

Brenda said Jordyn's been swinging like a monkey today.  She is just all over the place with her oxygen and it doesn't seem to be improving with the steroid she's been taking.  Tomorrow is the last day of it and we were all hoping to have seen more progress.  I did have a nurse tell me that some babies' don't respond to the steroid until after the 10 day course is through.  Maybe that's what she's waiting for.  Brenda called me tonight around 5:30 to talk to me about Jordyn.  She was a topic of conversation at the Neo Meeting today for all the doctors.  Most everyone is in agreement that the next step for her is to have an ear, nose, and throat specialist come in and look at her vocal chords.  When she had her PDA Ligation when she was 1 week old, one of the risks was that one of her vocal chords could get bumped or cut which would effect the way her voice sounds.  Brenda is concerned that this could have happened to Jordyn and she could have a little reflux and be aspirating the milk into her lungs.  The exam is really easy on the babies', he will cut a hole in the tip of her pacifier and then while she is sucking on it, he will thread a tiny camera down through the hole and into her throat to look at her vocal chords.  She said he usually works on Tuesdays so we will hopefully have more information tomorrow. 

Feisty

Addi is still on the High Flow today.  She seems to be really tired and Brenda is concerned that the machine is wearing her out.  Brenda said that they would watch her carefully and if she gets any more fatigued then they will switch her back over to the CPAP to give her a break.  They turned up her flow a little more so hopefully she'll be able to stay on that machine.  Her stomach was very distended today and hard so Brenda ordered an x-ray of her stomach.  It showed a lot of air and milk in their so the nurses are going to give her some suppositories to help move things along for her.

Jordyn didn't have any changes today.  She is growing so much and tolerating her feedings really well.  Brenda asked me if there was anything she could do for me today and I said she could help Jordyn get past the NIPV and onto a new machine like Addi's.  Brenda told me she would much rather see a baby who is tolerating their feedings well and growing than a baby who can breathe all on their own.  She said that if they are growing and healthy, then all of the other stuff will catch up.  Jordyn gets a lot of comments about how feisty she is.  She can get super mad, really fast.  The nurses all say it in a complimentary way though because they think being feisty is a really good thing in the NICU.  They would much rather have a baby who puts up a fight then one who just lays there.  Jordyn definitely keeps them busy with her heart rate, saturation, and her temper tantrums!

High Flow

Addi has been doing so well on the CPAP machine and her settings were as low as they could go, so Dr. Richardson decided to move her to the High Flow machine.  She is doing all the work now.  The machine is just blowing oxygen into her nose but it's not helping her to breathe or expand her lungs like all of the other machines have so far.  She's doing really good with it so far.  She has been having a lot of residual milk coming back up again after her feedings.  The doctor thinks that is happening because there is so much air in her stomach from the CPAP and he is hopeful that with the High Flow she won't get as much air in her stomach and be able to digest her milk a little better.

This is the sight that awaited Bert when he got in to change Jordyn's diaper tonight.  She had moved around so much that she had shimmied her diaper right off.  Needless to say, Kim had to change all of her linens.  Jordyn's heart rate has been so much better today.  She still has moments where it gets really high but that is a common side effect of the steroid that she is on.  It's not dipping down low today and isn't affecting her saturation levels.  Dr. Richardson is still puzzled about it, but thankfully Jordyn seems to have fixed it on her own.  Keep your fingers crossed that it stays fixed.

Waiting Game

I had my 6 week postpartum check-up today and the doctor was way behind schedule.  I was at the office for 2 hours.  Because of the long doctor's appointment I wasn't able to go down for the 10:30 or 1:30 Cares.  I finally made it down at 4:30 but decided not to hold the girls then and wait for the 7:30 Cares.  They don't want us to hold at back-to-back Cares because it is too much stimulation for the babies.

Dr. Richardson called me today after rounds to update me on the girls.  Addi is having a lot of reflux after each of her feedings.  He thinks it is related to the CPAP machine and she is getting too much air in her stomach and that when she is ready to move to a new machine (which will hopefully be in the next day or two) it will improve on it's own.  Jordyn, however, is very puzzling to the doctor.  Her heart rate is fluctuating a lot.  The doctor thinks she is forgetting to breathe and then takes a lot of fast breaths to try to catch up.  He doesn't really know why this is happening.  They ran some tests on her today and everything came back perfect, which is why he is so puzzled.  He said we just need to wait and see with her.  Either she will improve on her own in the next few days or she will get worse.  I hate waiting!!

Cooper went on a field trip today to the Hogle Zoo.  It was snowing and freezing cold but he had a great time.  He said his favorite animal was the Grizzly Bear.

Movie Stars

A couple of weeks ago the NICU Manager came to talk to me and said that Channel 2 News wanted to do a story on the NICU and he wondered if I would be interested in helping out with that.  He said that he was going to submit a few stories to them and they would let him know which ones they wanted to record.  Well, 2 days ago he called me and said they had chosen us and to be there Thursday at 10:00 to be interviewed.  Bert and I were pretty nervous about it.  They interviewed the doctor first we decided to hold the girls before they came down to talk to us.  I encouraged Bert to hold the girls together like I had yesterday. 

The girls were awake when they first gave them to Bert and they were looking all over and at each other. 

Right when we were ready to put them back in their beds, the news people came.  They took some shots of Bert holding them and then took me into a quiet room to interview me.  It was really quick and hopefully I didn't make a fool of myself.  Then they came back and took some more shots of the girls in their beds.  They will let me know when it will air.  Most likely it will be next Friday or the one after that on the 5 o'clock news.  We were joking around with some of the staff about how lucky it was that Bert was the one holding the girls because it will be his chest on TV and not mine.  Instead, i get to watch and listen to myself...I'm not so sure I got the better end of this deal. ;)

Reunion

I finally got to go visit today!!  It was so good to see the girls again and be with them.  Our nurse, Carly, asked me who I was holding today and I said both because I was thinking I would hold one and Mom would hold the other.  Carly was quiet for a minute and then said she thought I probably could hold both.  She asked Reggie, our respiratory therapist for today, and he said that would probably work and so I got to snuggle with both girls at the same time today!  It was so fun to see them next to each other and compare them.  We haven't all 3 been together for 5 1/2 weeks and it was a fun little reunion.

Jordyn is on the left and Addison is on the right.

Daddy-Daughter Time

I was definitely feeling better today, but not quite good enough.  I'm hopeful that I'll be back to 100% tomorrow and can go see my babies again.  In the meantime I've been spending a lot more time with Jacks, Coop and Ry.  The weather has been so nice so the kids have been playing outside quite a bit.  I went out to check on Rylee and this is what I found.

Jacks is a sweet big brother.  He was sitting by her on the glider and pushing it back and forth for her. 

My mom went down this morning to help with Cares and held Addi.  The nurse told her that we can now hold the girls 2 times a day.  Bert went down for 7:30 Cares and then held both girls.  Our nurse, Candace, commented on how calm Jordyn was while Bert was holding her and that she'd never seen her stay so calm for so long.  I never got a call from our doctor today but the report from the nurses was good again.  Both girls are tolerating their feedings really well.  They are doing well with their breathing machines and the respiratory therapist has been slowly turning their machines down and trying to wean the girls more and more.  It's crazy that Jordyn is doing better on the NIPV and Addison is doing better on the CPAP.  They just needed to switch machines.

Bert had a blast holding both girls skin-to-skin.

All Dressed Up

I'm still sick today and more frustrated then ever.  I did have a friend tell me that at least they are having good days while I can't be there with them.  It would be twice as hard to be away if they weren't doing so well.  Glass is half full, right?  Our nurse, Carly, texted me a few pictures today since I couldn't be there with them.

Addi is doing really well on her CPAP machine.  She is tolerating it so much better than Jordyn did.  She is staying in the low 20%'s with her oxygen.  She weighed in at 2 lbs 13 oz tonight.  Both girls had blood gas's done this morning and both results were great.

Jordyn is doing much better on the NIPV machine.  Everyone keeps commenting that she isn't swinging as much as she used to and she's staying in the low 30%'s of oxygen.  When I talked to Carly this morning she said that quite a few of the nurses were commenting that now that they can see her face better they think Jordyn looks like me.  Carly got her dressed up in her first outfit today.  She could only find one sleeper, so Addi is still naked.  Jordyn weighed in at 2 lbs 14 oz tonight.  Big girls!

Steroids

I still have a sore throat today, which is so annoying, so I won't be going down to visit again.  I really miss my girls!  I called down this morning and talked to our doctor, Brenda.  She said the girls look really good.  They are tolerating their feedings really well and their stomachs look good.  Addi gained 2 ounces last night which puts her at 2 lbs 11 oz.  Jordyn is 2 lbs. 13 oz now.  Brenda also said their coloring looked so good and they both look so healthy.  That was so nice to hear!  She said Jordyn is liking her new NIPV machine a lot better and has been a lot more relaxed since they made the switch, but she is still swinging quite a bit.  Brenda talked to Dr. Minton and they both decided that it would be a good idea to give Jordyn some steroids which will help strengthen her lungs.  The steroids will be given over the course of 10 days but we should see a difference in just 2 or 3.  Brenda said she is really excited about giving them to Jordyn because she thinks it's the extra boost she needs to be able to progress onto a different breathing machine.  She said Addi might follow in her footsteps and get the steroids too but she wants to wait and talk about it with all the other doctors in their Monday meeting.  Until then, she moved Addi to the CPAP machine.  Her numbers were so low on the NIPV so hopefully she will tolerate the CPAP well and be able to progress too.  I would love to be there with them but I know they are in good hands.  I'm trying to rest as much as I can today.  I've drunk some hot tea and put Vicks on my throat and plan on gurgling salt water later (BLAH!).  I gotta get rid of this sore throat ASAP so I can see my girls again.

We had a Ward Talent Show last night and Bert took the boys to it.  Cooper's been talking about performing a magic trick for his talent but I didn't think he would really do it.  My boys are notoriously shy in front of people they don't know very well and I thought for sure he would chicken out.  But, happily, I was wrong.  He did his trick, which was making a green silk scarf disappear, and everyone loved it and cheered for him.  I'm so proud of him and wish I could have seen it!

NIPV x 2

When I woke up at 4:00 to pump I had a sore throat.  I was so bummed and I really hoped and prayed that it wouldn't be there when I woke up at 8:00 for the day, but it was.  So...I won't be able to go down and visit the girls today.  It makes me so sad.  I called down to tell the nurse I wouldn't be coming and to get an update.  Shaylee is our nurse today and she said the girls had a really great night and had been really good for her this morning.  Brenda, our doctor for today, called me after she had finished rounds to give me another update.  Addi's numbers on her breathing machine are so low and she is doing so well.  They are going to continue to wean her a little more and then hopefully switch out machines in the next day or two. She said she is handling the 22 calorie fortifier so well that she wants to bump her to the 24 calories one.  Addi is growing and getting so big.  Yesterday when I was with her, mom and I kept commenting on how big she looked.

Tiff and I made these little fabric stars for the girls.  I wear them around with me and then when I go to visit I leave one with them so they can have my smell with them.  Their sense of smell is their most developed sense right now and one of the nurses said that babies will usually turn their heads toward the fabric because they can smell their momma.  I sent them down with Bert and my mom today since I couldn't be there.

Brenda said that Jordyn is doing good but she is frustrated that Jordyn has been stuck on the CPAP for 2 weeks now.  She decided that it would be a good idea to change her to the machine that Addi is on.  Jordyn will now be on the NIPV too.  Brenda thinks maybe part of why she swings so much is because she doesn't like the CPAP and it's hard to get a seal so a lot of the air leaks out.  It will also be good to give her face a break from that mask.  When I talked to Shaylee after they had switched her machine, she said that Jordyn is liking the new machine so much better.  She was very relaxed and sleeping really good.  Shaylee has been our nurse a few times before and she commented that she hadn't ever seen Jordyn so relaxed before.  I made sure to send the camera with Bert so he could get a picture of her sweet face.  It's been hidden behind her CPAP mask for 2 weeks and I was so bummed that I couldn't go down and see her.  She already looks different in just 2 weeks.  They are growing and changing so fast!

Best Blankets on the Cul-de-sac

Tiff bought some material to make some new blankets to drape over the girls' beds.  She cut all the ties around the blankets and then enlisted Jacks and Coop to help tie them.  We are hoping that this will help the boys to feel a little more a part of things.  They did a great job with it.  After the boys were done, I took the blankets over to Harriet's and she embroidered the babies' names on the blankets.  They turned out so cute!!

Even Rylee wanted in on the action.

 Tiff went down with Bert and I tonight and held Jordyn for the first time.

No Infection

We had some really good news when I got to Cares yesterday.  Addi doesn't have an infection!!  She just needs some extra nutrition to help get her levels back up to where they are supposed to be.  Her stomach was very bloated today so our nurse, Carly, gave her some lasix which should help move things along.  They are going to give her the fortified milk again tonight and see if she tolerates it this time.  The last time they tried was Sunday night and it didn't go very well.  Fortified milk is my milk with some extra calories and nutrients added in.  She's been gaining a lot of weight lately but most of it is water weight so it would be nice for her to gain some real weight.

 My thumb looks huge in this picture with Addi.

Jordyn is kinda coasting along right now.  She is starting to look so big now!  She got her PICC taken out on Monday night.  She still swings a lot with her oxygen so she won't be able to get off this machine quite yet.  The nurses are either commenting on her swinging or on her feistyness.  She's definitely got a reputation in the NICU.  I got to see her for a minute today without her mask on and I think she is starting to look like Rylee's baby pictures.

 Nana holding Jordyn.

Clean and Fresh

Addi was wide awake again today when I was there for the 10:00 Cares.  It's so fun to see her awake and sucking on her pacifier and looking around.  She had to have a blood transfusion today because her hemoglobin was low.  The doctor, Tawny, said that they found a tiny bit of blood in her stool last night and so they are concerned about that.  They took an x-ray of her stomach but it looked fine.  Addi had a bunch of labs done today and some of her numbers came back low.  Tawny is concerned that she might not be getting enough nutrition and would need to add some more through her IV.  The other option would be another infection somewhere in her body so I am really, really, really hoping it is the first thing.

Jordyn has officially opened both of her eyes.  I'm sure she would have gotten them open sooner if she hadn't been on the CPAP machine.  It makes her eyes get swollen and puffy and it was even harder for her to get them open.  Bert and I went for the 7:00 Cares and Candace was our nurse.  I helped give both of the girls a sponge bath and then Bert held Addison while I held Jordyn.  They both did great with their oxygen while we held them tonight.  That made me feel so much better after what happened yesterday.  Candace changed out their linens on their beds while we held them so they are nice and clean tonight.  Addi weighs 2 lbs7 oz now and Jordyn is 2 lbs 10 oz.

Fresh Milk

Jordyn is staying about the same.  It's so nice to hear the doctor tell me that there aren't any changes.  She weighs 2 lb 10 oz now and is getting 23 mls of milk.  The girls have been eating so much more lately and have finally used up those first 48 bottles of colostrum, so now I will be bringing in fresh everyday.  I held Jordyn today and her oxygen had to be turned up quite a bit.  There was one point where she dropped down really low and wasn't breathing so they hurried and put her back in her bed. She does better in her bed, especially when she's on her tummy.  They've told me that as she matures and gets bigger she won't fluctuate so much.  I'm looking forward to that.  Today was a little bit scary.

Addi was so social this morning when I went in.  She was wide awake and looking around and sucking on her pacifier.  Everyone kept commenting on how adorable she is and it was really fun to see her so awake.  Both girls' stomachs were a little distended today and so the nurse gave them both glycerin enemas.  Brenda, our doctor today, said that their stomachs have a lot of air in them from their breathing machines and the enema will help move that out of there.  Tonight Addi weighed in at 2 lbs 5 oz. and is getting 16 mls of milk now.

Pops and Gram came up this weekend for a visit.  It's been nice to see them and visit with them.  Bert and I were able to do FaceTime with my family tonight while we were at Cares.  I wish they could all just come to the NICU to visit, but I guess this is the next best thing.

One Month Old

The girls are 1 month old today.  This first month has flown by.  I never thought I'd say that, but with our crazy schedule, it's hard to believe it's been a month.  I hope it continues to go as fast.  These signs hang up above their beds now.

Addi's speech bubble says "Where's the party?"

Addi is still on her NIPV.  We are very excited about that because it's the longest that she's been off the vent before.  I finally got to hold Addi today for the first time in a long time.  She's so sweet and calm and tolerates everything the nurses do to her.  We hardly ever hear her cry.

Jordyn's speech bubble says "Wake me when the party starts"

Jordyn on the other hand is very feisty and can get so mad when we get in with her for Cares.  She tells you exactly what she thinks of it and she usually doesn't have anything nice to say.  I hear her cry every single time we do Cares.  I had so many nurses tell me while I was in the hospital that it was a good thing I was having girls because girls are fighters.  I can see that with both my girls, but in very different ways.

NIPV

Addi got taken off the ventilator this morning at 9:30.  Her doctor said that they had a lot of people around and ready in case she didn't like it again, but it went just fine.  She was calm and the transition went very smoothly.  She is now on the NIPV which stands for noninvasive positive-pressure ventilation.  It gives her puffs of breath to help her open her lungs but she has to do most of the work on her own.  She is doing really good on it so far.  They didn't want us to hold her again today because of her new machine.  The less we move her and bother her, the better she will tolerate the change.  I haven't held her since Monday and am really missing it.  She is getting 10 mls of milk (about 1/3 of an ounce) and weighed in at a whopping 2 lbs 5 oz tonight.

Jordyn is doing great!  She still swings quite a bit with her oxygen, but otherwise is tolerating her CPAP well.  She is getting about a half an ounce of milk and they have started fortifying it with the other nutrition that she was getting through her IV.  They will probably take out her PICC in the next day or two because she doesn't need it anymore.  Her weight tonight was 2 lbs 8 oz.  The girls are getting so much bigger and more stable.  It's such a relief and we pray it continues.

Bert's work held a raffle today to raise some money for us.  Bert has always loved working at Centershift and the people he works with (which is why he doesn't mind the daily commute!)  Everyone at his work was so generous and we were shocked when we heard the total amount of money raised.  We feel so blessed and grateful for all the love and support everyone has shown throughout this past month!!  Thank you so much!

Low-key

We've had a couple of very low-key days in a row.  It's been great!  There really haven't been any changes with the girls.  Jordyn is still on the CPAP, which is great news.  On Sunday when I was holding her, she needed quite a big of extra oxygen and our nurse started prepping me for the chance that she would have to go back on the ventilator.  So far she has been holding her own.  There is always the chance that she'll have to go back, but the longer she lasts on the CPAP, the better.  Her oxygen levels swing about a lot, which is just a side effect of her prematurity.  Cathy, our respiratory therapist, said as she gets older and bigger, that will change.

Jordyn's got her left eye open all the way and the right eye is almost there.

I haven't been able to hold Addi for 3 days now.  Her doctors have wanted her to be as still as possible to help her throat heal.  She hasn't had any blood in her stomach today, but the respiratory therapists have been getting a little out when they suction her throat.  She is about as low as you can get on her ventilator settings so the doctors are going to extubate her tomorrow or the next day.  Third times the charm, right?  Her PDA keeps opening and closing.  They think it is very small now and her lungs have been really clear so they want to keep waiting and see if it will close on its own rather than make her go through the surgery.

 Peggy with Addison

Sponge Bath

Addi still has a little bit of blood in her stomach.  Brenda said she wanted her to have a very low-key day to help that heal so they are going to sedate her and try to not bother her or move her too much.  I couldn't hold her today because moving in and out of the bed can move the tube around and bother her throat even more.  She is getting 5 ml's of milk (which is 1 tsp) and weighs 1 lb. 14 oz.

Jordyn is doing great on her CPAP machine still.  The side effect of this machine is that the eyes get a little puffy from the mask and so she has had an even harder time getting her eyes open, but she finally did it today!  Mom was holding her and she opened her left eye to look around.  We couldn't tell if the right one was open too because of the CPAP.  She is now getting 10 ml's (2 tsp) of milk and weighs 2 lbs 3 oz.  Mom and I got to help give her a sponge bath tonight.  It was our first time helping with that!  She got all cleaned up and got new fresh linens and a bow.  It was fun to be there for that and help with something new.

Mom holding Jordyn

Private Suite

We walked into the NICU today and were greeted by a pleasant surprise.  They had moved Jordyn's bed in the night and now instead of being across the aisle from each other, they are side-by-side.  Now when we are holding the girls we can draw the curtain around both beds and still be together and be close to both babies.  We keep joking that it's our own private suite.

The girls are both doing good today.  They are both doing well on their breathing machines and will continue to stay on them today.  The doctor said they are both tolerating their feedings, although Addi has had some blood in her stomach which they think is from her intubatation.  They think her throat might have gotten scratched and is now bleeding and sore.  These poor babies.  It breaks my heart when they are in pain and I wish I could take it all away.  I've heard a couple of nurses say how great it is that they won't remember any of this.  Unfortunately, that doesn't really make me feel better.

Bert and I went down this evening and he held Jordyn skin-to-skin.  She really seemed to love it.  I held her last night without doing the skin-to-skin and they had to keep increasing her oxygen and eventually had to put her back in bed early so she could get calmed down.  But tonight she did great.

Day of Rest

Dr. Minton decided to give Addison a day of rest today, so she's staying on the ventilator all day.  They will most likely try again tomorrow.

Jordyn is still doing great on the CPAP machine.  They've described several different machines that the girls will move through as they get more and more independent on their breathing.

Apparently there is some discussion amongst the doctor's about Jordyn's head ultrasound.  We're starting to get conflicting results / ideas on the bleeding.  We were always told that it was a Grade 4 and bleeding was inside the ventricle and starting to seep onto the tissue.  Dr. Minton has a theory that it could be an extreme Grade 1 hemorrhage.  He described the possibility of the clot being next to the ventricle, not inside, but it's so big that it's actually pushing on the ventricle.  The doctors are seeing the same ultrasound, but can't tell if the clot is inside the ventricle or just really big and overlapping the ventricle.  This was news to us, as it always sounded like it was for sure a Grade 4.  Dr. Minton has this theory and sounds like he is alone on the idea so we'll just have to wait and see what plays out.  He was saying that it might take up to 6 months before we'll know for sure because that's when they can actually do an MRI.  In the meantime, they will keep measuring her head and ensure it's growing at the rate that they expect and not getting too big too fast.

 Linda holding Addison for the first time.

 

Cannula

Bert and I went down for the 11:00 Cares and were standing by Addison's bed waiting for the nurse and the Respiratory Therapist to come and start.  The nurse finally came up, but instead of talking to us and introducing herself, she sat down by another nurse and started shooting the breeze.  I figured she was still just waiting for the Respiratory Therapist to come.  After 20 minutes, I finally asked her if she had already done the Cares for the girls and she said she had.  She'd gotten in with both of them at 10:30 so we had just missed it.  I understand when they need to get in and do it because the babies' are restless, but I was super bugged that she didn't tell me when I got there. 

Dr. Minton was the girls' doctor today and he decided we should try Addi off the vent again today.  He wanted to put a cannula in her nose that was hooked up to the ventilator machine and it would blow puffs of air in to help open up her lungs.  She would still have to do most of the work herself but it would help out a little.  I told him I didn't like the idea and that she has been through so much this past week and needed a break.  He told me that today is a new day and he didn't see any benefit in waiting a day because he could come in tomorrow and she could have something wrong and they would have missed their opportunity.  He said that when they have an opportunity, they have to take it. They want to get the babies off the ventilators as quickly as possible because there is always a risk of infection when you have something foreign in your body.  She was on the new machine for about 2 1/2 hours and then they had to intubate her again and put her back on the ventilator.  She's doing fine back on her vent and is much more relaxed.  We weighed her tonight and she was 910 grams.  That's just over 2 lbs.  She's still getting 2 ml's of milk but it will start increasing every day now.

Jordyn continues to do well on her CPAP machine.  She's been on it for 2 days now and they are pleased with her progress.  Her eyes are still fused shut.  I keep hoping when I go in that they will have opened while I was away, but no luck so far.  She is now getting 5 ml's of milk every 3 hours and it will continue to increase everyday.  When we weighed her tonight she was 930 grams which translates to about 2 lbs. 1 oz.

New Gear

Bert worked from home today because Mom was babysitting Erin's kids and wasn't available to help me lift Rylee.  I didn't need to hurry home to give Ry a nap, so I camped out in the NICU for a couple of hours.  I helped with both girls' Cares and then snuggled with Addi for about 45 minutes.

Addison with the new Central Line in her chest.

Brenda, their doctor for today, said she wanted to try getting Addi off the vent today and onto a CPAP machine like Jordyn's.  Unfortunately Addi wasn't quite ready because she was only off for about 10 minutes and her body just kind of shut down.  She had to be intubated again and put back on her ventilator.  Her nurse tonight, Katrina, said she was surprised when she heard they wanted to do that so soon.  She thinks they should have given her more of a break because she's had it so rough.  We really like her and how well she takes care of the girls.  She told us that she wanted to sign up to be a Primary Nurse for our girls, which means that when she is working, she will most likely be put with us.

This is Jordyn with her CPAP machine on.

Bert got to hold Jordyn tonight for the first time.