Monday, July 29, 2013

Home sweet home

Normally, I would start the blog by telling you about the things that have happened over the week in order. However,the end of this week trumps everything else so I will start there.  We are happy to announce Amelia got to come home from the NICU on Thursday! We could not be any more excited or in love with this child, hence the delay in making a post....neither of us have been able to put her down long enough to write it!

This week started out hard, Amelia was supposed to come home Sunday, however Saturday night after giving her a bath and nursing she had an episode where her heart rate slowed and oxygen decreased and so she had to stay. It was such a hard day because we had gotten so excited and ready for her to come home and yet once again we had to leave the hospital without her. I think that day was the hardest so far for Ryan & me. Our hearts were broken and discouraged that there was no longer an end in sight. We both had no encouragement left for one another because we were both so tired of the NICU and so ready to have our baby home with us.  We went home and I cried as we left the NICU yet again and we prayed for God's timing and protection.
The following Sunday morning we woke up and went to church and the title of the sermon was "encouragement". We both knew then that God was saying, even when you don't have the strength to encourage one another, I am here doing it for you.  
In order to help cheer us up that day, Amelia's nurse took a photo of her with the NICU camera and posted it above her bed. It is one of the sweetest photos and shows her little happy disposition. Here is the photo:

We also set up a night to do a "rooming in". These are nights designed for parents to come & sleep in a room off the NICU with the baby and practice what it will be like at home ( except with a NICU nurse available & the monitors still on). The doctor had not offered us the option because he felt we would not have any trouble caring for her at home since we are both physicians, but I told him we needed the night emotionally just to have more time with our baby. We called it our "NICU slumber party" and I'm so glad we did it.  It was the first time in 54 days since she was born that we had privacy as a family. The first time that there wasn't a nurse or other families around while we held her. The first time that the only noise in the room was us and not the sound of 5 other babies crying or monitors going off.  It was wonderful and the closest to normal that we had gotten to.  The way the NICU rooms are set up, sound bounces and every monitor sounds like it is going off right above you.  We had developed a little bit of anxiety every time the noise of a monitor alarmed. Ryan & I over the past 2 months had developed a system of saying "not us" when another baby's monitor went off to reassure the other that Amelia was doing fine and no need to pay attention to the monitor. That night in the room alone was so nice, there were no "not us" alarms.
Our NICU slumber party

The day we got to bring Amelia home was wonderful. We got to say our goodbyes & thank yous to the nurses who have taken care of Amelia over the past 55 days and then put on her "going home" outfit and leave with our baby girl. In an odd way, it felt like what most families must feel when they leave the hospital 1-2 days after a normal delivery. Our home coming was only 55 days delayed.
Last picture in the NICU

Thank you treats for the team who cared for Amelia. 

Now that we are home, we are getting adjusted to our family of 3. She is such a good baby that the transition has not been hard. We have her in a bassinet next to our bed for now. The hardest thing for me has been going to sleep at night. I just want to lay there and watch her sleep. I still worry so much that she is going to stop breathing.  Everyday we thank God for this beautiful baby. It is still hard to believe that she still is not supposed to be here for another month. She really is amazing. Here are some photos from the week.  She is up to 5 lbs 13 oz as of Friday.  :)

After her 1st bath at home 
First trip to the doctor 
First walk outside
Daddy serenading his girl...she is already so spoiled! 

Please continue to pray for Amelia that God protects her inside and out. Pray for us that we will have peace and trust in God's plan and protection of her. Pray that we will be the parents God intends us to be. 

Saturday, July 20, 2013

Watching the scale


Amelia on the scale getting weighed

It is Strange how a number can mean so much...but it does. Every evening we can't wait to weigh Amelia to see how much she weighs that day. It gives us an indicator in how she is doing overall. Is she getting bigger and stronger? Is she closer to coming home to us? Each day she has been gaining weight and we are thankful for that. This week is the first week she began outgrowing some of her preemie clothes! She weighed 5 lbs 6 oz last night! 

This weekend my parents & grandmother got to come up to visit. It was really special because they were able to hold Amelia for the first time! After my water broke,  many of you know that our families came up to support us. Well my mom stayed after I came home from the hospital to help us as we adjusted. She was here almost 3 weeks. During that time because Amelia was so little the doctors were only allowing us to hold her once a day so Ryan & I were taking turns. Mom only got to look at her in the isolete and touch her little hand. I know that it must have been incredibly hard for her. During that time there was a big 9 lb baby next to Amelia that was in the NICU because of complications of being too big during delivery. He was in an open crib so his grandmother was able to hold him anytime. I know that Mom would see them and it would make her sad. So it is no surprise that when I called her and told her Amelia was in an open crib she responded, "does that mean we can hold her?". The next response was, "we are coming this weekend".  It was such a small thing to get to see our family hold her, but it melted our hearts.
Nonny holding Amelia for the first time.
Mamaw Betty (AKA Grand-Mom)
4 Generations of women
Amelia apparently loved their visit as well because she had a very good week. She has been off of the oxygen for over a week now and doing great. She has been bottle feeding well enough that they were able to take her feeding tube out of her nose.   They are even allowing her to breast feed a few times a day now.

Thursday was Ryan's birthday and he received an answered prayer that day.  Amelia had her repeat eye exam and it showed NO retinopathy!  So thankful for God's miracles everyday in this sweet baby.  Below are some pictures from Daddy's birthday snuggle time:

This week the doctor said we should make sure the nursery is done because it won't be much longer! We are so excited! Here are some pictures of her nursery.

Her homemade gifts

Today, Amelia got to do her car seat test.  This is where they check to see if she fits in her car seat and if she is able to maintain good oxygen levels in her seat. She passed!

It will not be long....soon we will get to have our sweet baby girl home with us!

Thank you for your prayers regarding Amelia's eyes, breathing, and feeding.  She will have another follow up eye exam in 3 weeks.  Please continue to pray for Amelia as we prepare and get closer to bringing her home.  Pray for Ryan and I as we prepare to bring her home, we are blessed beyond measure. 

Thursday, July 11, 2013

Counting the days

41 days of NICU is hard to believe. On one hand it seems like it can't be possible that 41 days have passed since Amelia was born, on the other hand it has been 41 of the slowest days we have ever experienced.  Today I am thankful for the nurses and doctors taking care of Amelia. All of this has been so overwhelming and so different than what we imagined our first month with our baby being. The nurses and our pediatrician friends (thanks Katherine & Bethany) have helped guide us through it and make the experience easier.

This week Amelia has continued to do great. She did have to get her oxygen placed back on after a few days because her oxygen level was too low, but they have already began weaning it off again.  She has been gaining weight better than expected ( a trait that surely comes from her mother..haha!) She is up to 4 lbs 12 oz today!  That is 2 full pounds up from her birth weight!  We are so proud of her! Now that she is bigger and able to maintain her temperature we are able to hold her more frequent than before. This also has allowed her to come out of her isolette and graduate to a big girl crib. I remember asking one of our friends at the very beginning of our 41 days ( that had a baby premature like Amelia), "does it get easier to leave your baby in the NICU at night?" her response was "it actually gets harder." At the time I appreciated her honesty, but also couldn't imagine it getting any I know.

 Another concern this week is Amelia's eyes.  She had her 2nd eye exam and it showed some retinopathy of prematurity. Hopefully this will regress and she will not have any major complications, but if it continues to progress the other way it could cause some major vision loss and she could need surgery.  We are praying that God protect her little eyes and heals any  signs of retinopathy.  Please pray for healing of her eyes and God's protection of her vision.  She will have a repeat eye exam next week to follow up on the changes.

This week please pray specifically for Amelia's eyes and that her lungs continue to grow stronger and she is able to come off the oxygen for good. Also pray that she continues to do well with her bottle feeds and able to transition to all of her feeds via bottle or breast.

Tuesday, July 2, 2013

Big girl steps

The past week has been a tough one. I started back to work so that I would have more time off when Amelia is able to come home.  It helps that I work at the same hospital, so I am able to stop in and see her throughout the day,but it makes for some very long days/nights. Luckily, being the little sweet heart that Amelia already is, she has been trying to make it easier on Mommy by taking some big steps this week. On my first day of work (after working 13 hours) I came up to her crib to finally get to hold her for the day and she had this note on her crib from the day nurse:

Now it may seem like, what is the big deal? But because she was born so early, babies at her age don't know how to coordinate swallowing and breathing so the doctors don't allow bottle feedings until they are around 33 weeks. That day they decided to just see if she would be interested and on her first try she drank her whole bottle ( even if it is a tiny bottle).  They are still only allowing her to do two bottles a day because they dont want her to use too much energy sucking those bottles down (it is hard work). :) Daddy got to be the first one to feed her a bottle next (ironic I know, because I am spending hours a day pumping the milk), but I already know she is going to be a daddy's girl. ;)

The next day they let us know that she was doing well enough that we could start bringing in clothes for her to wear. Lucky for us Curt and Lindsey brought up all the gifts from our TN shower on the Jenkins side so she now has lots of new preemie and newborn clothes. That was another thing that made my first week back better too. Curt & Lindsey got to meet Amelia for the first time, and each night when I came home from the hospital I got to open a few gifts and see all the thoughtful things people had gotten her and read little messages from all the people praying for us.

Another big step this week was Amelia getting to lose an "accessory" this week. As a girl, I am sure one day she will like lots of accessories, but right now her oxygen nasal cannula was an accessory we were glad to see go. We know there is a chance she may need it again, but we are praying she breathes well enough to keep it off. We love seeing her little face without it in the way.

Finally, she turned one month old yesterday! We can't believe how time flies! And on her one month birthday she weighed in last night at 4 lbs!

We are so thankful for the way God is working in her little life already.  We know that we could not have made it through this first month without his loving arms around her (and us). Thank you to each of you for your prayers, cards, calls, and support.  We are so in love with this little angel and we haven't even gotten to take her home yet! When she comes home, we may not be able to put her down!