Visiting Hazel

I know, I know... She came home months ago and I'm barely posting pictures of the kids first visit with her. Apparently when I promise something asap that means two months later. She's been home almost ten weeks now. She was in the NICU for almost twelve. Crazy to think that she still hasn't been home as long as she was in the NICU. It feels as if she's been home a lot longer. I'm grateful for that. It automatically felt so natural to have her home, of course because it is natural to be with your baby 24/7.

Susan, Hazel's primary care nurse, was ready with the camera as the kids came walking in to see Hazel (Thank you Susan!).  I love their excited expressions!

 This is how you hold babies.

I wish these two pictures were more in focus!

I promise this was the best family picture we got. With six people it's hard to catch everyone looking at the camera at the same time let alone smiling. Hazel was pretty overstimulated by this point. Can you tell?

41 Weeks 6 Days, 11 Weeks 3 Days

Sorry for the radio silence. So much has happened. Let's play catch up, shall we?

Monday they opened up the NICU for sibling visits. Yea! We knew on Friday but didn't tell the kids until we pulled up to the hospital on Monday. They were beyond excited. I think it was a little much for Hazel. Talk about overstimulation.

Hazel had a second swallow study last Thursday, the 15th. She didn't pass, again. Boo. On Tuesday the Developmental Team suggested starting her on the Gel Mix before the weekend. Babies have to be 42 weeks to use it (which is tomorrow). The doctors said, why don't we start her today. Ok! She started it Tuesday night. Then on Wednesday morning they decided to let her eat whenever she wants and however much she wants. She has been a great eater since her first breastfeed, so naturally she has done great. I was worried that she would be too sleepy at night to wake herself up , but she has done great.

She is still anemic, which is why I worry about her being sleepy, but her hematacrit keeps getting better. When they did labs on Tuesday it was 29.9. One of the nurses said it's usually between 35-45. About 6 weeks ago she was 23, just to give you an idea of how low she has been.

On Thursday Hazel's nurse called and told me to bring in Hazel's carseat to do her carseat test. I told her I would if she thought we were close, but I really didn't want to get my hopes up... again. The nurse practicioner called an hour later after rounds with the doctors were done and asked if we wanted to room in that night and that Hazel could be going home on Friday. What?! I didn't know whether I should believe her or not, but of course I got my hopes all the way up and got excited. How could I not?!

Well, we roomed in last night and Hazel did great waking up to eat, and she passed her carseat test. Which means... we brought her home today!!! It all happened so quickly. I still just stare and her and smell her cute head and can't believe it's real. We are all so happy to have her home!

I will post pictures asap. I wanted to share our exciting news with all of you right now! I couldn't wait. :)

39 Weeks 1 Day, 2 Months Old!

Look who is on a regular cannula! That happened Monday. Her oxygen flow is down to 1. She also hit exactly 6 pounds on Monday. She is still doing great nursing and taking bottles.

They've stopped her multivitamins because there has been calcium in her urine.

Life around the home front has been busy. We are finishing up our year of home schooling. What a fun adventure it's been. It's been nice to have flexibility in our scheduling and sometimes the boys have been motivated to get more of their work done so they get ahead. I can't wait for summer break to get here though and have time with all of us together. Sometimes the stress of everything gets to me and I just wish we could all have a day off.

*******************

I typed the above info on Tuesday when she hit 8 weeks. Here's the latest... She had a swallow study on Friday. They do a "live" x-ray while she drinks a barium mixture so they can see if she is aspirating (that means that fluid is going into her lungs) when she eats. When they did the thin liquid she did aspirate while on her right side. They tried a thicker liquid and she did fine. Here's where it gets tricky.

If she is aspirating that is very very bad. It could lead to pneumonia among other things and she could get really sick. Where she already has chronic lung issues that's a very big deal for her. It affects her more than it would a baby with healthy lungs.

The solution to keep her from aspirating is to thicken her milk. The problem with that is the stuff they typically use to thicken the milk with is only approved to be used in infants 42 weeks and older. She's only 39 weeks. What they can use is bananas. But, the amount of bananas they would have to use to thicken her milk wouldn't give her the right balance of nutrition she needs.

So the plan they came up with is to give her 21 mL of her milk/banana mix with a bottle and the rest of her milk she has to get through her feeding tube. The good news is I can still do an entire breastfeed with her. The Occupational Therapists have seen how I feed her and they know that I know how she has to be held so that she's comfortable and won't aspirate (hopefully). If she is going to aspirate breastmilk is the best thing to go into her lungs. Not that we want it to...

She will do another swallow study in a few weeks and hopefully she will pass. The sad news is that we know she won't be coming home for at least another 3 weeks because she has to be able to do all of her feedings by bottle or breast to come home. She can't do all of her feeds by breast because she has to get the extra calories and protein still, and she will for a while after coming home. She will still have to do 3-4 bottles a day with the extra calories and protein. I think Avella had to it for a few weeks after coming home. And she can't drink an entire bottle for a feeding because of needing the bananas to make it thicker... Well, you get the picture, right?

I don't remember how much I've explained the tightness in her muscles, so forgive me if I've said all of this before. Because so much of her growth in the womb was without fluid she was pretty wedged into one spot. Her right foot likes to pop up to touch her shin, she doesn't like to straighten her arms, and she likes to tip her head to the right and turn it to her left. The therapists come and work with her every morning and they have also taught me how to hold her, lay her down, and how to gently encourage her to relax those muscles and get a better range of movement.

She's doing better at straightening her arms and her foot is getting more flexible. Sometimes she will turn her head to her right while I hold her or she'll let me hold her with her neck straight and lined up. We try to lay her in her crib with her frog (that little beanbag thing) around her head to keep it straight. If we try to lay her on her right side it typically puts too much stress on her neck and she gets upset and tries to not let her head lay down on the bed but lifts it up instead. So much hard work for such a little girl!

They haven't told me how long they think she'll have to do therapy, but we will have to do it once she comes home. Whatever I can do with her will help the process along. She responds better when it's someone she knows. She is familiar with the therapists and with her primary care nurses. When she gets a new nurse or therapist she doesn't always feed or respond as well with them.

She is awake so much now. It's fun to talk to her and have her interact. She loves to look out her window, which is where she was looking when I took this.

Hazel got this bear from my friend and her family (along with some candy that Ryan and I may or may not have shared with the kids). I had put it in her crib, but I came in the other day and found it like this. I get why they put it there. She can see it better there than in her crib, but it almost looks a little creepy to me just hanging there. Maybe that's just me though...

Today while I was holding her she picked her head up off of my chest and turned it to the right. So great! It's a really big deal that she can do that and be relaxed.

Love,
Ella

38 Weeks 1 Day, 7 Weeks 5 Days Old

I can't believe how close it's getting to my original due date. And it's great to see how much progress Hazel is making. This has been a big week for her and me!

I've been able to breastfeed her each day and she got a bottle today too. She nursed today for 23 minutes. Way to go, Hazel! The orders are that she can be fed twice per shift. If she nurses for at least ten minutes they count that as a full feed. Sometimes while feeding we have to turn her oxygen up, but we didn't have to today even though her flow was lowered down to 1.

The hardest thing for her is that she gets worn out quickly. She is still very anemic so she gets sleepy and worn out easily. Her body has finally started to make more red blood cells, but it will take months for her levels to be where they should.

You know what is great? When Hazel's nurse told me to get ready for her to come home! She is doing so well and progressing quickly with her feeds. Once she is able to do all of her feeds by bottle or breast then she can come home! Can you believe it, friends? I know it will still be weeks, but it's so good to hear. 

I've been feeling great this week. It's almost weird to feel so normal. I've been driving, doing laundry and dishes, cleaning, and organizing. It feels good to be back!

This is a few days worth of milk. Hazel eats just more than one of the large containers a day. The good news is I'm going to donate my milk this go round. I tried to with Avella, but she was older and they need the milk to be from when the child is younger. 

She's so pretty. :) 

Avella tells me almost daily that she wants to fly. 

I love Daddy Daughter pictures. They make my heart happy.

Love,

Ella

37 Weeks 3 Days, 7 Weeks Old

I keep trying to get a picture of her smiling. I caught the tail end of it here.

When she tries to open her eyes she'll stretch her eyebrows up really high to help her.

She did this after she was given a little bit of milk the other day. Apparently it wore her out.

Perfect, tiny, little hands.

We were able to do a non-nutritive feed today! She latched on immediately. Kinda funny since I wasn't prepared for it. She nursed for 15+ minutes. The therapist couldn't believe how well she did. Now we get to do two actual feeds a day. Those are two HUGE days right in a row. She got moved down to a 1.5 on her oxygen flow today too. Really crazy that she did so well nursing, considering. The top picture here is her passed out right after nursing. The second is her after her bath. We were going to try nursing again, but she was pooped!

I got a stomach bug over the weekend and didn't get to see her for four days in a row. The good news is now that I'm feeling better my stomach feels like it's back to normal. I had been having issues with it ever since I had Illeus. So, I guess I'm grateful I got a stomach bug and it all worked out? I am also off of all of my meds. That means I got to drive myself to the hospital today! It's funny to see how Hazel and I make progress together. When I was driving the kids to my friend's house today Avella said, "You're driving, Mom?" I told her yes and she replied, "By yourself?!" 

While my friend Lindsay watched her today Avella had a poopy diaper. When Lindsay asked her if she could change her diaper Avella said, "You can give me chocolate." Ha ha. Never a dull moment with that girl. My friend Wendy came over to stay with the kids the morning I went to the emergency room. When Wendy went to get Avella dressed Avella kept telling her, "No, that doesn't match." Then she picked an outfit out herself that Wendy said did in fact match. :)

Love,

Ella

36 Weeks 4 Days, 6 Weeks 1 Day

Still such a cutie.

I love seeing her eyes open.

Hazel's first bath!

In the hospital they do 'swaddle baths'. She loved it! The wrap she is in is fleece which keeps her warm during the bath. She was happy and relaxed the entire time.

Cindy is one of Hazel's primary care nurses. We love her!

It's funny how having a baby in the NICU makes normal things like a bath seem so difficult. She's so tiny still and having all of the tubes and wires doesn't make it easy. It felt like it was the first time I had bathed a baby. I always want to make sure she's comfortable. When she was first born changing her diapers was a big deal. It was hard to do knowing that every time I moved her it caused her discomfort and pain. I'm glad she's not as sensitive anymore and her nerves are more developed.

 She is fascinated with her mobile. It's pretty amazing that as young as she is she enjoys watching it. Her therapists were worried it would be over stimulating, but she loves it.

Did you watch the eclipse? We got the kids up at 2 am to see it. They came outside, saw it, and went right back inside. Trevan was so quick he isn't in the picture. 

My pumping stuff for one day. I can't wait to be done with all of it. Pumping is so much harder than nursing - plugged ducts, bleeding, more plugged ducts (which make me feel nauseous, kinda weird), worrying about my milk supply, yada yada. 

She is always, always, awake for Dad.

 We went through the coolest car wash as our activity for FHE on our way back from the hospital. 

It felt like a space tunnel. Don't worry, we vacuumed too so it counts as an activity. 

We've had to get creative. :)

 

So much cute cheek chub!

• She is still on the High Flow machine. Her flow is at a 2.5.
• Her therapists are still working with her on increasing her mobility in her arms, feet, and neck. She tips her head to the right instead of holding it straight and prefers to have it turned to the left. I met with them today to learn how I can work with her and what I need to do once she is home. It was very interesting and I'm excited to know what I can be doing.
• She is getting close to being ready to nurse. I was hoping we could start this week, but I think it will be next week.
• She has officially hit six weeks and gained two pounds! She weighs 5 lbs 4 oz. Little chunker. ;) I swear it all goes to her cheeks though.

 

She's doing great overall. It's nice to hear her nurses tell me how wonderful she is doing. We realize that she truly is a miracle baby. It's easy to say she's a miracle, but when you really think back on everything she's gone through you realize just how many miracles we've been blessed with and continue to be blessed with. We know that not everyone is blessed in the same way, but we also know that our Heavenly Father has a plan for each and every one of us. We may not understand why and it may not seem fair, but He loves us each unconditionally. We all have trials of faith and have opportunities to trust in Him. I am grateful for the growth and increased faith that my trials have blessed me with.

Love,

Ella

35 Weeks 4 Days

I know I've put some updates on facebook, but since not everyone is on facebook I might end up repeating some things. Here's the latest...

Happy one month birthday on April 4th! She had gained exactly one pound on her one month birthday. Good girl. She weighs 4 lbs 10 oz now. She also had her eye exam and her eyes are fully developed which means they were able to move her oxygen parameters up. If preemie's oxygen levels are too high when they are first born, before their eyes are fully developed, it can cause blindness.

April 2nd the NICU called me just before midnight to tell me Hazel had reflux and aspirated milk into her lungs. They did an X-Ray and called me back in an hour. Her lungs looked OK. They also did a viral panel to make sure it was her aspirating and not a virus - it came back negative. Because of all of that she had to go back on the CPAP machine at a level 7 (She had been on the High Flow at a 4.5), so it was quite a step back. She was down to a 5 on the CPAP by the next day. She got moved back down to the High Flow machine earlier this week and is currently at a 3.5.  

Her hematocrit is still low, its at 25. They aren't going to give her another blood transfusion. She had one her first week of life. When you get a transfusion it stops your body's natural response to produce more blood if you're low. They are giving her body time to let her body start making more on it's own. It should start going up by next week.

Hopefully we can start doing the non-nutritive feeds next week. She needs to be breathing and eating to be able to get home so I'm anxious for progress. Her nurse thinks we will be able to start next week.

My Mom went home on Saturday because her Mom isn't doing well. I'm glad she can be with her Mom, but I miss my Mommy! It was so hard to say goodbye. There have been a lot of emotions since she's gone home... All of them sad. 

Snuggle time with Grandma and Aunt Shannon.

She always has to have a hand up.

Holding Grandma's hand on the way to the airport.

Avella has to help with everything, and I mean everything. How great is my Mom to weed my garden in time for Spring on top of taking care of my kids, doing home school with them, doing dishes and laundry, etc.

Sometimes when Hazel gets really hungry when it's feeding time I'll give her a sponge dipped in milk. She sucks it dry. Hopefully it's a sign that nursing will go well.

I love her wrinkly forehead.

She's looking more grown up. 

I love this picture of Daddy daughter time.

I made her a pearl bracelet. It goes halfway down her arm... or fits on Ryan's pinkie. Ryan has finally been able to realize his dream of becoming a hand model. Check that off of your bucket list, hon. ;)

Grandma made her a baby doll to keep in her crib. This nasal cannula is the one that's used with the High Flow. The picture above, that shows her bracelet is the one they were using when she was on CPAP. The High Flow one is more comfortable for her.


Love,
Ella