21st Day in the NICU

Today, I went down to visit with Tanzi before I went to work. Up to this point, I have been really impressed with the hospital staff and nurses. However, today, I was not too happy with the nurse that was on duty. She had been Tanzi's nurse once before, and we didn't really care for her then, but today was unacceptable. Everytime Mauri or I have gone to see Tanzi, the nurse meets us at her bed and explains how Tanzi is doing and anything we needed to be aware of. All I got from the nurse today was "Hi, Dad". They call all the parents in the NICU Mom and Dad. She did have some nice classical music playing next to Tanzi's bed, but after thinking about it, she probably did that so she didn't need to be over with Tanzi. I just felt like she could have cared less that I, or even Tanzi was there, which was completely different than our experience with all the other nurses. I was just upset about the whole situation, but I didn't let it get in the way of me spending time with Tanzi. She was sleeping the whole time I held her, and I just loved snuggling and cuddling her.

I keep thinking I am so blessed to have Tanzi in my life even with the challenges she is going through right now. I love her so much along with Kyri and Graysen. Most importantly, I love Mauri, and her amazing strength through this whole trial. She is an amazing wife and a remarkable mother to our three kids. I really couldn't ask for anyone more perfect than her. I can't imagine where I would be in life without her. I'll continue to thank my Heavenly Father every day for the beautiful, special person He blessed me to be with for eternity.

Tanzi's signature shot, can't wait for the day when we can get all those tubes out!

Her bedding today reminded me of Valentines Day.

Someone drew this cute bunny for Tanzi to celebrate Easter.

3 weeks old...already!

Well, we finally got some answers form surgery!! And what did they say? They said that it is ALL up to Tanzi. And for now she still has WAY too much output from her Anderson. So, we will just wait...and wait...and wait. It looks like it will be quite the wait. The surgery site is not healing very fast. At all. But it does look like it's healing. So, that's good news.

We also learned from the GI test yesterday that Tanzi has a reflux problem. It's hard to say how serious it is since she doesn't normally have anything in her tummy to be coming back up. And what IS in her tummy is being sucked out by the Anderson tube. We will know more about this once she is actually getting feeds into her tummy. Also, there is very slow motility in her digestive system. They said that she may eventually need medication for this in the future (maybe even in the next few weeks) and that there is even a possibility that she may need surgery to help correct this.

Where's Tanzi?

Peek

-A-

BOO!

Today was Group Therapy. We brought the kids this time. Hey, it's free lunch. And we can use free anything these days! There were a couple moms who had babies at PCMC a few years ago. They talked about their experiences and how their children are doing now. It was good to hear that there truly is a light at the end of the tunnel.

I talked to baby Emma's mom, Julie, this morning. She told me it looked like they were going to be able to take Emma home today! I'm SO happy for them! Their journey is far from over. In fact, it will be a life-long journey for them, but at least they will be able to experience it at home! As hard as it is to see some of the friends I'm making going home I couldn't be more thrilled for them! I wish them all the best!

After Group Therapy we had an appointment for Kyri and Graysen to have "Sibling Hour". Since they still can not go in and see Tanzi then they got to have their own hospital doll that they got to bring home and were told about all the tubes and wires that are hooked up to Tanzi. I think this was especially good for Kyri, who is always asking about baby Tanzi. Now she has her own little "sick" baby that she can take care of, just like the doctors and nurses are taking care of our Tanzi. I failed to take a picture while they were at Sibling Hour, so I will have to take a picture of the kids with their dolls tomorrow!

Day 19 and Funny Kids

Today was a really great day!

I got to spend all morning with Tanzi and all afternoon with Kyri and Graysen.

It was perfect!!

And this afternoon I took the kids on a walk and we stopped at the park. I wish I would have taken my camera, though, because those two were quite the sight! Gray had on his 12 month pants, which totally look like capris! His white socks were quite noticeable (since his pants end at about the top of his socks), along with his brand new shoes. And Kyri had her pink and white "clown shoes" (as Gary likes to call them) on the wrong feet and her hair hadn't been combed all day!

They both looked awesome!!

Then I had to tell a little girl (probably about 6 years old) that if she couldn't be nice she should just go home. She was throwing sand at kids! I was the only adult at the park, so I decided I would take action.

I'm so awesome!!

This morning I got to the hospital just as Tanzi's nurse was taking her down to radiology for a test. I was able to be there with her the whole time. And she actually did much better than any of us expected. She only cried a couple times! She actually cried a lot harder after we got back to her room and I had to do her cares. She was screaming pretty hard, but the second I picked her up she stopped crying. This baby girl just LOVES to be held!! And then she was wide awake and everyone that came to her bedside (doctors, nurses, etc) commented on how alert she was. It made me think of Kyri. Kyri came out of the womb wide-eyed and alert. When Kyri's pediatrician checked her in the hospital he even said he's never seen a newborn so alert before! Gary and I have been trying to decide if Tanzi looks more like Kyri or Graysen (we already know she looks like them and not us) and sometimes I think she looks more like Gray, but today she definitely looked more like Kyri to me! (but from what people say Kyri and Gray look exactly alike, so what's the difference, right?)

So I was there when the medical team did rounds, but we couldn't really discuss much because we were still waiting on the results from radiology. Then we would have to wait to see what surgery said about those results. And THEN we could make some decisions from there. Tanzi lost a little weight again last night, but they also had to stop her feeds around midnight for this test. So, the doctors want to give her a little more time before deciding if she needs a fortifier in her (my) milk or not. I also asked them if they thought about ever putting her back on the gastric re-feeds, and they just told me that we will have to wait and see what the surgeons think about the results of her GI test today. So, long story short (or did I make a short story long?), there were no changes made today (besides getting her back ON her feeds), but much should be decided tomorrow.

Here's Tanzi all cozied up!

Wide awake! And NO mittens on! Yes, she has already tried to pull those tubes out!

Showing off her outfit for the day.

Some things never change.

Gray has a hard time going to sleep before it's dark! Every night before bed we clean their room and every night when I go check on them it is the HUGEST disaster! I am now having second thoughts about that book shelf we put in their room!

And apparently tonight after he made a huge mess he didn't want to get into bed by himself. So, he helped himself into his sister's bed (while she was sleeping). And he was STINKY so I had to wake him up and change his bum. But then he went to sleep in his own bed.

Last night after over an hour of being in his room he knocked on the door. When I opened it not only was his room a mess, but he was stinky AND he had taken all of Kyri's blankets off of her and her bed (while she was sleeping)!! The poor girl was curled up in the fetal position, trying to stay warm.

And one night after a while of being in his room Gray just started crying. Well, more like screaming, really. We let him cry for a while, but then decided we better go check on him because that's unusual for him to do. When we opened the door Graysen was sitting on Kyri's bed, on her pillow, RIGHT next to her head. She was sound asleep and he was just screaming. I have a feeling that he climbed in her bed (while she was awake) and she told him to get out of her bed, which made him mad, so he started crying and she just went to sleep...which probably made Gray even more mad!!

Graysen is talking SO much these days! Some of which is hard to understand. And sometimes we will ask Kyri to interpret for us. She usually knows what he's saying. One of my favorite words he says right now is "Wes!" (for yes) I don't know why, but I think it is SO stinkin' cute when he says that!!

In case you're wondering: YES, Kyri still talks about her imaginary friend, Sissa. Sometimes Sissa is not a very good influence on our Kyri girl! For example: one day we were talking about going to the store and Kyri told me we could go tomorrow (Sunday). I told her that we don't go to the store on Sundays. When she asked why I told her that Sunday is a day to think about Jesus and do what He wants us to do, like go to church instead of the store. She informed me that Sissa goes to the store on Sunday. I said, "No she doesn't" Well, don't try to tell Kyri what her friend does or doesn't do!! She insisted that "yes, she DOES go to the store...with her MOM!!" So, finally I told her that she should teach Sissa about Jesus so she can start doing what He wants her too! Nice one, right? :)

Another time when we were having Family Home Evening about baptism, at the age of 8, by the proper authority, Kyri pipes up and says that Sissa's mom baptized her when she was a baby. Gary and I said in unison, "No, she didn't!" Again, how would WE know? Kyri insisted that she did. So, again, we told her that she needs to teach Sissa about Jesus and about when He wants us to get baptized and by whom.

Anyone want a Sissa around?

She's FREE!

Kyri has been talking about death a lot lately! Sometimes I'm not really sure how to answer her questions. But the other day she was talking about my sister's dog, Buddy. She asked why he had to die. I told her he got old and was really sick and his body just quit working, so he died. (We have had several talks about how when you die it's just your body and not your spirit, but I'm not sure how much her 3 year old mind gets that) Anyway, shortly after talking about this she said, "Well, Grammy and Grampy are pretty old!!" I just laughed and said, "Yeah, I guess they are!" She replied, "They're way, WAY old!! (pause) I think I know why Grampy's so old!!" Me: "Oh really? Why?" She said, "Because he has hurt feet so he always has to wear his shoes in the house! I think that made him old!" I LOVE this girl!! She never misses a thing and that mind of hers is ALWAYS thinking!

18 Days Later

Today, I went down to the hospital before work. The pictures below do not describe what was going on when I first walked in to the NICU to see Tanzi. Right when I walked through the doors to her room, I could hear a baby screaming so loud....I knew it was Tanzi. It was odd too because she rarely cries. As I walked over to her crib, the NP was doing a check up on her and was trying to figure out why she was crying so hard. Her nurse Dani was gone to lunch but later told me Tanzi had really been fussy this morning and she tried everything to get her to calm down. The NP and I tried to figure out what was going on and finally decided to take off her mitten that was on her hand. As the NP started to take it off, Tanzi started screaming louder than I have ever heard any of the babies scream in the NICU. It turns out that some tiny strings in her mitten had wrapped around a couple of her fingers and were really tight. The NP had to go find some scissors to finally cut the string. Her fingers were pretty swollen, however, I didn't even think to take a picture of them. I immediately held her and she calmed right down almost instantly. She was awake for the rest of the time I was there with her and we just talked and chatted with each other! The pictures for today's post are following Tanzi's traumatic event.

You wouldn't even know she had just had her fingers tied up with strings just prior to this picture.

She was so content after we got those strings removed. I just snuggled her the rest of the time I was there.

Dani, our nurse, offered to take a picture of Tanzi and I

Rambling Thoughts

Right now I have a lot of random thoughts that I just need to get out. Don't expect this post to all tie together. It won't. It's just feelings I need to get written down.

Tanzi is not gaining weight. At one point we talked about starting her on a fortifier. Then a lactation specialist came to talk to me. She said that maybe it would help Tanzi gain weight if we only fed her my hind milk and not any fore milk. The specialist reassured me that this would be fine since I am producing "an abundance of milk". She told me that by the time Tanzi was 2 weeks old I should be pumping 24 ounces in a 24 hour period. I pump more than twice that amount.

Great. It's official. I'm a cow.

And Tanzi only eats approximately 12 ounces in a 24 hour period. (I have pumped that much in one pumping before!!) Since we can only keep 2 buckets of milk in the freezer at the hospital, our freezer here at home is really filling up quickly! Thank goodness we bought that deep freeze about a month ago, otherwise the freezer in our house would have nothing in it but breast milk.

This morning when I called to check on Tanzi the nurse told me she lost weight...again....and we may still need to start her on a fortifier, to give her more calories. I asked her if we could wait just a couple more days to see if my hind milk would make a difference. She said that since she has been getting my hind milk for 2 days already and still lost weight we will probably need to get her on the fortifier soon, but she said she would ask the MD about it. I wonder what ever came of that. I'll have to ask them tomorrow.

I have decided that by the time the weekend comes around I am so physically and emotionally drained I can barely see straight! Then I remember what my original plan was. I was going to have my baby and go home. Gary would take a week off work and when the baby was sleeping he could play with Kyri and Graysen and I could get in a little nap. Then when Gary went back to work my mom would come for a week or so. And when the baby was sleeping my mom could play with Kyri and Gray and I could take a little nap. And by the time the 2 weeks were over I would be feeling rested and recovered and could get on with life with 3 kids at home. Well, life didn't go quite as I planned. And here I am...a tired, emotional, basket case.

And I get home from the hospital or I get the kids in bed and I don't feel like doing anything. I don't feel like cleaning or doing laundry. Nothing. So I don't. I just go pump. But then I feel like a really bad mother and wife and I get up and put some laundry in the wash. I won't be surprised if it sits in the washer for a couple days before I have the motivation to get around to it again.

I love being able to go to the hospital to spend time with Tanzi. But every time I'm there I feel incredibly guilty for not being home with Kyri and Graysen. And when I'm home with Kyri and Gray we have a lot of fun. And I'm happy to be home, but I once again feel incredibly guilty for not being at the hospital with Tanzi.

I can't help but wonder if these pangs of guilt will ever go away...

I have a pretty good feeling they won't.

The other day I was just holding Tanzi and decided I should sing her some songs. I thought about some of Kyri's and Gray's favorite songs and started singing. One of Graysen's favorite songs I sing to him at nap time is "You Are My Sunshine" so I figured it would be a perfect song to sing to my sleepy baby.

"You are my sunshine

my only sunshine

You make me happy

when skies are gray

You'll never know dear

how much I love you

Please don't take my sunshine away"

Tanzi was asleep by now, but I thought I would continue with the second verse. However, I didn't make it very far before I broke down. This song never meant what it means now.

"The other night dear

as I lay sleeping

I dreamed I held you in my arms

but when I awoke dear

I was mistaken

and I hung my head and cried"

As I'm driving up the hill to Primary Children's I'm reminded of when Gary and I rushed there in the middle of the night, after Tanzi was life flighted there. We didn't know what to expect, as everything was happening so fast. It was dark. It was cold. It was lonely. We tried to get what little sleep we could on the waiting room couches, but morning came so soon. And there we were, waiting, scared, and all alone.

Now this drive seems so normal. Routine.

And when I walk into the hospital now it's not so dark, yet I still feel scared. And lonely. The nurses are nothing but wonderful. Our experience has been only positive. And yet it's hard for me, as a mother, to focus on anything but the negative.

This is not supposed to be our life. This is something that happens to other people. Not us. But as I walk into Tanzi's room I see Megan's mom, Lisa, with a forced smile on her face. She looks tired and sore. Little Megan was born only 2 days after Tanzi and is in more critical condition than Tanzi. This is Lisa's 3rd child too. She still has to go home, at some point, and be a mom to her other children. I know how she feels. Then I notice Emma's mom, Julie. She's talking about the struggle of feeding little Emma, who wears out too quickly to eat what she needs. Emma was born a week before Tanzi...with spina bifida. Even when she goes home, she will always need some special care. Across the room I spot Stephanie, McKenzie's mom. She told me once that she has been here for over 3 1/2 months. I'm not exactly sure what's wrong with McKenzie. Some type of muscle disease. And it doesn't look like she will be going home any time soon. Stephanie is there all the time. She does SO much for her little baby. Probably even more than some of the nurses. And so I scan the room for baby Lilyana's mother. I have only seen her there a couple times. She's not there today. I have never talked to her. I don't even know her name. She looked to me to be only 18 or so. I overheard the nurses talking one day. Lilyana was born in December and the nurse said, "This baby has everything wrong with it that a baby could have!" I don't know exactly what she means by that, but it's obviously not good. I quickly take a look at my angel, lying all snuggled up in her blankets. I pick her up and, while working through a mess of tubes and wires, I take a seat in the rocking chair.

I then take another look around the room and I realize that Lisa, Julie, Stephanie, and even Lilyana's mom never thought this would happen to them. This is not supposed to be their life.

And so I come to grips with the fact that this is my life.

Days 16 & 17

Well, there's not too much to report from the last 2 days. We are just still waiting. Today I was there to talk to the MD during rounds again and was there when the surgery team came by. Dr O'Brien, the MD, wants to see what we can do to move things along so Tanzi can get regular feedings and come home soon. However, the surgeon, Dr Downey, said he thinks Dr Meyers (the Dr who actually performed Tanzi's surgery) will wait a while before deciding to make any changes. But he thinks Dr Meyers will evaluate Tanzi on Friday anyway, but Dr O'Brien wants to call her tomorrow to see what she wants to do! I'm just glad I don't have to decide when to call or make decisions....I'll just wait and see what they tell me. Today I did ask about the strength of the suction on the Anderson tube. Last week (or whenever it was) they found blood in the output from the Anderson so they decreased the suction from 40 to 20. Today I noticed it was back up to 40, so I asked Dr O'Brien and Felice (the NP) about it. They said that 40 is protocol, 20 is very unusual. But tonight when I got home Gary said he saw blood in the output yesterday. I'll have to bring that up tomorrow.

Yesterday I stayed home with Kyri and Gray and Gary went down to spend some time with Tanzi. And she even got a couple of visitors!!

Here's Grandma from Bunkerville with our little angel!

Grandpa came to visit too, but he didn't actually ever hold Tanzi, so we never got a picture of him!

I think Tanzi always looks her size (small) when we post pictures of someone holding her rather than pictures of just her.

Showing off her outfit for the day...in a nice foot-up pose!

Nice spiky hair

(click on picture to enlarge)

Spikes....again

Tubes, tubes, and more tubes!

This is how I found Tanzi when I got to the hospital today (Sunday)

It may look like a mess, but she didn't seem to mind...she was out cold!

Friday April 15th - Day 15 in the NICU

Today I got to the hospital pretty early. That meant I was actually there when the surgery team came to take a look at Tanzi and see how she is doing. (They do this on a regular basis, but we have never been there for it) They said that she is right on track for what they expect. The doctor said he wouldn't even think about changing things for at least 3 weeks out of surgery, but probably closer to 4 weeks. Today has been exactly 2 weeks since Tanzi had her surgery. And then after 3 or 4 weeks we can start seeing if she's ready to get her feedings into her tummy. I asked them if the amount of output from her Anderson tube is normal and they reassured me that it is. While it's still way too much for making changes or thinking about taking it out, she is on track for the type of surgery she had. And then the doctor told me that the fact that Tanzi is tolerating her feedings is a VERY good sign....and that made me feel a little better. I tried to joke around a little with them, but the doctor never laughed...everyone else did, though, so at least I didn't feel like a complete idiot! It was good to actually see and talk to someone from surgery, since the last time we saw any of them was right after Tanzi had her surgery 2 weeks ago.

Here's Tanzi looking pretty pleased about the little pink puppy she got from her Uncle Dustin and Aunt Cassidy the other day! THANKS YOU GUYS!!

And I noticed the nurse put Tanzi's pink socks on the dog...probably because they stay on it MUCH better than they stay on Tanzi :)

Showing off her cute green outfit. The nurse apologized for not putting her into a girly outfit, but we actually really like this one!

And it was hilarious watching the male nurse practitioner trying to unsnap it so he could check Tanzi. I think he even said something like, "How do you get this thing undone? It has like 27 snaps!!" He made sure the bedside nurse and I snapped it back up :)

I LOVE this picture because you can't see any of Tanzi's tubes on her face...and for a fraction of a moment I forgot that life right now is not actually as peaceful as she looks.

Tanzi's monitor.

The top green number indicates her heart rate, the yellow one is her breathing, and the blue is her oxygen. The box in the bottom left corner is for the other baby that her nurse cares for.

Tanzi's monitor usually only beeps when she gets mad and gets her heart rate up in a hurry!

The other day Gary told me that all of Tanzi's pictures are starting to look the same.

She must have heard him and decided to pose for him!

Today my friend, Sharee, got married! I am SO glad I was able to go to her wedding! She was the most beautiful bride! And it was the first time I met her now husband, Brian. They make the perfect couple and I am SO happy for her! (Especially because now she'll live closer to me...selfish, I know :) )

And even though it was Sharee's special day she was SO concerned about giving us a baby gift for Tanzi. Part of that gift were these most precious booties that Sharee made!! We went straight back to the hospital and tried them on our Tanzi girl. We had to loosen the one that we put on the foot with the SAT probe, but other than that they fit perfectly!! She also gave Tanzi a super cute blanket she made (but I didn't take a picture of that yet)

Day 14

Tanzi had a nice quiet day today. She had a lot of snuggle time with mommy and daddy, which she loves. She is still on full feeds through her NJ tube. They probably are not going to do much with it, but Mauri and I noticed that it kept moving around when she would turn her head. We told the nurse, but she didn't seem to be too concerned about it. When Mauri was talking to the NP, she told Mauri that the surgeons knew it would be a long healing process and that it is going to just take time. Not the words you want to hear when you are Parents wanting to take your baby home soon. At least she is in good hands and we know our Heavenly Father is blessing her and us.

Peek-a-boo, I see you!

Tanzi just likes to be wrapped up tight and didn't like when we unwrapped her to show off her yellow outfit.

Almost a smile....the best we can get without it planned.

Tanzi has brought so much joy into our lives, we continue to love her, as well as Kyri and Graysen more and more each day!

Day 13

I was planning on updating days 12 and 13 together, so I was very pleasantly surprised to see that Gary posted about day 12! What a great daddy and husband!!

When I got to the hospital on Wednesday Tanzi was back up to her full feeds (16mL/hr) and she seemed to be tolerating them just fine. One thing Gary failed to mention was that on Tuesday Tanzi threw up some nasty green stuff a couple times. One time I was even there when it happened. This is NOT supposed to happen....that's what the Anderson tube is for, to suck all that stuff out! It reminded me of the first couple days of Tanzi's life when she was spitting that up a lot. So, when they stopped Tanzi's feeds on Tuesday they also stopped the gastric re-feeds. So, today (Wednesday) she was back up to full feeds, but they did NOT re-start her gastric re-feeds. Since she was tolerating this just fine I thought maybe the re-feeds on top of her full feeds was just too much for her little body to take. I mentioned this to the NP and she was thinking the same thing, which is why she didn't re-start her re-feeds. We brought this up during rounds and the Dr agreed that this was probably the case. So, Tanzi will stay up to full feeds, stay OFF of the gastric re-feed, and conitnue to have a central IV for fluid replacemnet. The Dr told me that I need to have a little pep talk with Tanzi and tell her that she needs to stop pulling her tubes out and get better soon so she can go home. Believe me, we have these pep talks EVERY day, but someone (Tanzi) just won't listen! :)

It was originally thought that surgery would evaluate Tanzi on Friday and we were all hoping we could change her NJ tube to a G tube. This means the feeding tube would end in her stomach, instead of her intestine. This is a HUGE step!! So, we were starting to get our hopes up. However, in order to do this we first have to get the Anderson tube out. It wouldn't make sense to feed her into her tummy if there's a tube there sucking everything out. But Tanzi still has WAY too much stuff being sucked out of her Anderson, so this will obviously not happen on Friday....or any time too soon.

While some of this seems kind of discouraging, we are just glad Tanzi is doing as well as she is!

All our kids have kind of had the old man hair-do....they don't have hair on the top/front of their heads. It is especially noticeable on Tanzi since her hair is a little darker and what she does have just sticks up! They also had to mark the NJ to make sure it doesn't slide any more.

Here she is looking quite serious

And here she is looking very peaceful

I got to go to group therapy again today. They fed us a potato bar. It was good. There were a lot more parents there this time. And one couple wouldn't stop talking! The husband was pretty funny and they were both quite entertaining! As much as I hope their little boy gets better and goes home soon, I kind of hope they'll be there again next week...it makes things seem a bit more enjoyable!

#12

Today was pretty quiet for the most part. I went to work and Mauri went to the hospital to be with Tanzi for most of the day. She is still continuing her recovery. This evening however, she had a little mishap that needed to be taken care of. When I finished work, I went up to the hospital because I hadn't seen Tanzi since Sunday and I really just wanted to hold her and snuggle her. When I arrived, the NP was talking with radiology because they were concerned about her NJ tube not being were it was supposed to be. Mauri had noticed it a day or so ago that it wasn't stitched to her nose like it originally was. When the did an x-ray they were able to see that it had come up a couple of centimeters and so it needed to be re-adjusted. So the radiology team had to call surgery to make sure it was okay to adjust it. They originally said it would be okay and they were going to do it in the morning, but they then decided that they shouldn't try to push it back in because it may coil up somewhere so they were not sure what to do. They decided to wait until tomorrow to see what the best option would be.

As a result of the feeding tube being in the wrong place, they decided to reduce the amount of breast milk to 5 ml/hr and start her back on an IV. McKell her nurse was really cute about the whole situation and said it probably wasn't even Tanzi that pulled it out, it was probably just the air or something. We really like McKell as her primary nurse.

While Mauri was there today, she did get to snap off some cute pictures though!

Wide awake with another headband McKell made for her!

We love seeing Tanzi in the outfits. It is much better than just her in her diaper with everything hooked up.

Today, McKell was helping her other baby calm down and Tanzi was fussy so she went and got this little swing that Tanzi could lay in and rock. She loved it and fell right to sleep.

Days 10 & 11

Sunday was quite the emotional day for me! We decided that we should all go to church. I was a little hesitant because I knew I was really emotional and I wasn't sure I was quite ready to talk to people about what's been going on. However, it was fast Sunday, and I just had a feeling that where I needed to be was at church. Of course, about the second testimony was the dad of Kyri's little friend who spent most of the month of February at Primary Children's with RSV. He talked about what a great ward it was to live in and how they truly helped out and supported his family SO much during that time of trial in their lives. Then he mentioned that he knew there were other families in the ward, some suffering similarly (us) and others with different trials. And he encouraged the ward to continue serving and helping those in need (still us). By the end of his testimony I was an emotional wreck! But I still knew I was where I needed to be when I needed to be. The Spirit comforted me in knowing that we have a fabulous support system right here in our own back yard! Our ward truly has been fabulous and we couldn't be more grateful for what they have already done!!

After church we were headed down to Provo to take Kyri and Graysen to Tammy's house (Gary's sister). So, we decided we would stop at the hospital and see Tanzi. Of course, the kids couldn't go in to see her and that made Kyri really sad. She kept asking why mommy and daddy could go in and she couldn't, because she really want to see baby Tanzi too! But she and Gray were great troopers and waited patiently while Gary and I took turns going in to see Tanzi.

Not a lot happened on Sunday. Another quiet, uneventful day in the NICU. (For us anyway)

The day nurses always say how great Tanzi is. She sleeps most of the time and requires very little. I have heard, however, that is not the case at night. This poor girl seems to have her days and nights mixed up! And at night she really shows those nurses just how feisty she can be....that's our girl :)

It seems like we're always talking about "the stuff" that gets sucked out of her Anderson tube. Well, here's a look at what it is! Remember, this is natural body fluid that should be working it's way through Tanzi's digestive system. And hopefully will eventually. We're still not there, but she is putting out less each day and it is getting a little lighter in color. Both good signs!

Monday (Day 11) was a big day filled with a LOT of information. First, I just want to say that they did come and talk to me about the breast milk mix-up. And I am feeling MUCH better about the situation. It was simply another woman's container that was mislabeled with my label, but none of that milk was given to Tanzi. The entire staff at Primary's has been SO great working with us, and I was especially impressed with how they handled this situation! What a blessing to have Tanzi at such a wonderful hospital!!

They turned off Tanzi's central line. AKA the IV she had going into her chest. She still has the IV inserted in case she needs it in the future, but no fluids are going through it right now. This is a BIG step forward. Let's hope she keeps it up!! And she is up to 16mL/hr on her feeds. This is now considered "full feeds" so they won't be increasing it any more. They NP did tell me, however, that Tanzi has not been gaining weight. They will watch her for a couple days without her central line and up to full feeds and if she still doesn't gain wight they will have to increase her calories. They will do this by adding a fortifier to the breast milk. Gary and I think it makes sense that she's not gaining weight because everything is going RIGHT through her!! But apparently she should still be growing.

Today they also decided that she still needs some replacement fluid for the fluid that's being sucked out of the Anderson tube. So, the solution? Put it back in her! That's right. Remember the picture above of that nasty green stuff that's being sucked out? Well, now they are re-feeding it to her through the NJ tube (the one that goes through her nose). The thought of this is truly disgusting. BUT it makes complete sense. This is natural body fluids that are GOOD for your body. They should be making their way through the stomach and into the digestive system. But since Tanzi can not get it past her stomach they are putting it into her digestive system for her!

Also, when I talked to the NP today she told me that the plan is for the surgeons to reevaluate Tanzi after 2-3 weeks to see if the surgery worked. And then we will go from there as to what the next steps will be. It sounds like if her body is not responding as they think it should she may need to have another surgery. We are praying that her body will start healing so that will not be the case.

This little baby of ours just wants to EAT!! She sucks on her pacifier...sort of...it's hard to get a good seal on it with that Anderson tube in, so today she resorted to her finger. Boy, she sure was sucking on that for all she was worth!! It made me laugh out loud, actually! But you can see she's also trying to pull on that NJ tube. They are constantly taping and re-taping those tubes so our little fighter can't actually get them out...but that will never stop her from trying!!

She sort of looks like some kind of little animal, don't you think? She was making me laugh, though, because she held this position for a LONG time, as if she was begging me to take her picture. So I did! I think she's trying to show off her SAT probe (the oxygen monitor on her foot). It IS quite fashionable!!

"How about this pose, mom, does it make me look bigger?"

As hard as it is to just WAIT, we have decided that is MUCH better than taking steps back! We are so proud of our feisty little fighter!

Our two little sleepy heads

Kyri usually has the blanket over her head and ALWAYS has her hands up! And you can't see it in this picture, but her feet are off the side of her bed. Sleep tight!!

Here's Gray in Kyri's pajamas (maybe we should invest in some boy PJs?) on the bean bag NEXT to his bed! But he sure does look comfy!!

Day 9

Today I got to go down to see Tanzi while Gary stayed home with Kyri and Graysen. It was nice to be able to snuggle her! She absolutely LOVES being snuggled! I got there early enough that I was able to join her medical team as they came to do "rounds". That's just when they discuss Tanzi's treatment, how she's doing with it, her progress, any changes that need to be made, etc. We have never been there for rounds before, so it was kind of interesting. They said a lot of medical terms that I didn't understand, but it was nice to be able to ask any questions. Tanzi's doctors were there, along with her nurse practitioner, and her bedside nurse. First, the Dr again apologized about the whole breast milk mix-up confusion. I asked for more details, but she was slightly unclear. She said that I would be able to ask the nurse that will be there on Monday for more details. Then I was asking a few other questions about Tanzi and her progress. There is still quite a bit of stuff being sucked out of her Anderson tube. However, it is starting to get lighter in color. The lighter it is and the less there is the more her intestine is healing. So, that is just part of the waiting game. It will be a while. Then I asked about when Tanzi will be able to start eating from a bottle or breastfeeding. The doctor responded by saying, "Unfortunately, that's going to be the hard part about your stay here. It's not going to be for a while. Quite a while." Another part of the waiting game. And that's when I realized, for the very first time, that this is going to be our life for longer than just 2 or 3 weeks. Right after Tanzi's surgery the surgeon told us that an average recovery would be 2-3 weeks. I'm now realizing that's just how long it will take for the surgery site to heal. Then we have to add in the fact that Tanzi's stomach is extremely small since all the food she is now getting is bypassing her stomach. So, when she's finally able to eat from a bottle or breast feed it will have to be VERY small amounts at a time. And she has to be up to "full feeds" before she can come home. It will be a while...

In the meantime, here she is looking as precious as ever!

Wide awake!

A nice close-up

Kyri keeps asking about when Tanzi will come home. It's really hard to explain to a 3 year old why mommy and daddy can go visit and hold Tanzi and why she and Gray can't. It seemed like it would be easy to live this life for a few weeks. Our family has been SO helpful!! But now we are realizing that we need to figure something out so that Kyri and Graysen can be home and have a somewhat normal life. And while this all seems to be so hard and such a trial for us right now, I know that in the end we will be a stronger, closer, more loving family than when it began! It's not hard to have faith in our Heavenly Father or to recognize His hand in this. We know that it is through our faith, along with all of yours that Tanzi is doing as well as she is. The hard part is simply enduring.

A Fun Day With The Kids

Before getting into the fun day here is an update on Tanzi for Day 8 in the NICU: Our day started by getting a message from one of Tanzi's doctors in the NICU just before Gary was ready to leave the house. This concerned us just slightly since we have never gotten a call from an actual doctor. The nurse practitioner calls everyday, but never the doctor. So, I called her back and she tells me that Tanzi is doing great and they are still increasing her feedings, but that they had an "incident" in the middle of the night. My heart sank. The doctor proceeded to tell me that they think Tanzi was given another woman's breast milk!! WHAT?! She apologized, but I didn't even know what to say...so I was silent. She rambled on about a few things and then told me their main concern is HIV. Great. Just what I needed to hear. Really?! She told me about re-screening me and the "source mother" for HIV, but she also told me the source mother could refuse to do the test. I really didn't know what to think! I got off the phone and thought, "That's just like me going up to a total stranger and saying, 'Would you breast feed my baby?' " SO NOT RIGHT! Gary asked if I was mad about it. Mad is not really the right word, so I just told him I definitely wasn't happy about it, but what could I do? It was done and we needed to move on from there. Well, shortly after Gary left the NP called and told me that they sorted things out and Tanzi was NOT given someone else's breast milk. I felt a bit of relief, but for some reason there is something inside me that doubts this. I know I should trust the care Tanzi is in, but that is not a mistake I want to think was overlooked. So, I'm trying to believe it was just a bit of confusion...on all parts and that it really is worked out!

Gary went down to see Tanzi by himself, since the other two kids are home for the weekend. I told him to leave the camera so I could take pictures of Kyri and Gray, so of course today is the day that Tanzi was awake most of the time Gary was there. He said she even smiled at him...a lot! I'm glad he got to be there with her. Other than that there were really no changes, besides her feedings. She is such a good baby and we really can not wait until the day when we can bring her home!!

I will admit that it was a little hard for me to not see Tanzi at all today. The only thing that made it worth it was spending ALL day with my other two monkeys! We really had a pretty fun day! The highlight? Playing outside in the snow...in April...of course!

The first snowman we made all winter AND spring! :)

After we put him together we ran inside to find things to use for his eyes, nose, and mouth and by the time we came back outside he was like ice and we had a hard time putting his face in. But we had fun nonetheless. And then he toppled over right after I took some pictures!!

We snuggled on the bed and watched Signing Time

Kyri and Graysen have been really fussy today. I'm not sure if it's lack of sleep over the last week and a half or just not being around mom and dad or a combination of both, but after we worked past the fussing we really had a FUN day!! I really tried to be patient with them because I know that everything that's going on is not easy for them either. I'm glad we have them for the WHOLE weekend!

Day 7

Not a lot to report from day 7 in the NICU. No changes except her feeding every 12 hours. When I left today they were getting ready to increase her feedings to 9 mL/hour and in the middle of the night they will increase it to 10mL. Gary was able to see and hold Tanzi before he went to work today. He even did her "cares". That includes changing her diaper, taking her temperature, changing her oxygen monitor from one foot to the other, and measuring her tummy. However, Gary and I never measure her tummy. We leave that to the nurses. They all tell us how important that part is for Tanzi because if it starts measuring big they know there is a problem with how things are working in her intestine and if things are getting backed up into her tummy. We don't want to mess around with that, so we leave it to the pros! And I was able to do her cares before I left. It's nice to feel like we're doing something to help take care of our baby girl.

Tanzi's new corner.

There's a lot more room here. And it's much quieter! It's not by the main hall, like her other bed was. Machines rarely beep. And she is surrounded by 4 other girls! Not any boys in this room. It seems to be the "big girl" room because they are all "average" sized babies. We don't know too much about any of them yet, but it sounds like most of them were full term, not preemies. One baby has a chest tube, which makes bubbling noises, like boiling water. It's really quite relaxing.

We like our new spot! The only thing we miss is the window view we had.

Isn't she precious?

A new outfit!

It's funny because some nurses love getting her changed and others could care less if she was just in her diaper all the time. So, in some ways it's nice having a different nurse every 12 hours....we love the ones that appreciate a girly girl!!

And we think the knitted mittens are a much better touch than the socks!