Wednesday, March 31, 2010

Oh How I'm Changing

10 weeks old

Just to show you how much she has changed, the first picture was taken last week when she was 10 weeks old. The second picture was taken around her being 3~4 weeks old. It is amazing to see her size difference in the pictures and just how much she has changed. She is still small, but she continues to grow and get bigger each and every day.


As of today, Emma Claire is up to 3 lbs 14 ounces (1776 grams) PRAISE GOD!! She still is taking a bottle at least one per shift. Today, they are going to give her a break since she has had so many changes with going down on the liter flow of her Vapotherm to 2 liters, all of those changes seem small, but they wear her out! We are going to try a bottle again tonight after we go to church for Good Friday and see how she does.


I had an awesome day yesterday since I got to see Cohen in what seems like months. He is doing so good and getting so big! Hopefully they will be back to Baptist soon and then HOME!! Please continue to lift them up in prayers. Had a WONDERFUL breakfast at Pancake Pantry, love that place, with Stacy (EC's primary) and Christin (Cohen's mom). Every time we get together, it is always a LAUGH FEST!! Cannot wait to spend more of those types of days outside the hospital walls and with our little ones, what a GLORIOUS day that will be!



John 11:25-26 ~ Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die

Almost 4 Lbs

Emma Claire loves to suck on her 'fufu' as her Daddy has now nicknamed it. She is getting to be a BIG girl. She can now pretty much keep it in all on her own and when it comes out, she can be an unhappy camper!
Look at those cubby cheeks!!! Makes you want to just squeeze them!
Daddy feeding Emma Claire for the first time. She loves to take her bottle and I cannot wait until each one of her feedings is in a bottle and not down her feeding tube. We continue to give God all of the GLORY for her continued progress. As of today, she is getting two bottles per shift if she is behaving. Today she received one at 8 AM and then again at 5 PM. We are continued to be AMAZED at her progress. GOD is so GOOD!!!
Emma Claire is now getting 29 cc every three hours of 27 calorie breast milk. She continues to grow healthy and strong. She is now 3 lbs 13 ounces (1729 grams) and soon she will be in a big girl bed! I was talking with the chaplin which rounds in the NICU and it is so AMAZING to see how far we have come in our stay thus far. We KNOW GOD is in control and he continues to hear and answer our prayers. It was so hard in the beginning to see this far ahead eventhough we KNEW we would make it here. Everyday in the beginning I would come in and watch all of the other parents hold and feed their little ones and I wanted that so much, it took time, but here we are and I PRAISE GOD!!
Emma Claire loves sweet smooches from her Momma!
She is now down to 2 liters of flow on the Vapotherm and staying around 22 to 25% O2 (oxygen). She is still having wet and poopy diapers and eating very well. We have now watched all of our videos and are working our way towards the step down unit in the NICU. Once she is completely off the Vapotherm, we will get to move up there and then our next move will be HOME! It is so exciting to see how close we are to this day. It will definitely be bittersweet to leave, don't get me wrong, I cannot wait to have her home, but none-the-less it will be bittersweet. I do see frequent trips to see our buddies and I know we have some life long friends from our stay. Eventhough this is definitely not the path we would have chose, GOD has brought us through this and continues to guide us. He has put very special people in our path during this time, from the staff in the NICU to parents we have met along the journey.
Hey everyone! Can you believe how big I am getting?!?! I cannot wait to meet everyone who has been praying for me and lifting up positive thoughts.
Cohen: I miss you buddy and I cannot wait to see you and pull on your hair and give you sloppy wet kisses! Get well soon and cannot wait for our first visit together. My mommy says your are the sweetest little thing and she tells me how big and cute you are getting!
Happy Easter! He LIVES and Emma Claire is living proof of it!!!

Friday, March 26, 2010

First Bottle

Emma Claire now weighs 3 lbs 9 3/4 ounces (1636 grams). She is a BIG girl! She will now suck on her 'binky' and keep it in all by herself. She makes a mad face when it comes out and she wants you to put it back in for her. She is really starting to develop her personality. I love all of her little faces and she is really starting to smile at us when we talk to her. She still loves getting her baths and we gave her another one on Wednesday. I sat her up to wash her hair and she was asleep! She must LOVE to get her hair washed!

The doctor's have decreased her calories from 29 to 27 and now Emma Claire is getting 28 cc every 3 hours of 27 calorie fortified breast milk. I have filled up both of my boxes in the freezer in the NICU and now I am starting to freeze milk here at the house. GOD is so GOOD!

Emma Claire is still on 4 liters of flow on her Vapotherm. They are probably going to lower it to 3 liters in a couple of days depending on how she is doing. They don't like to make too many changes every day for her. Emma Claire was started on Reglan on Tuesday to see if it would help her since she is having random spells of apnea and only dropping her O2 sats. We will see if the Reglan helps since this COULD be related to reflux.

Emma Claire had another eye exam on Monday and Dr. Wallace was very impressed by her eyes. He will check her again in 2 weeks for another routine eye check. She is doing so good and we could not be more proud of her!

Being held by her Daddy
Emma Claire was worn out after being held by Daddy
Emma Claire taking her first bottle from Mommy. Since she is now 34 weeks they and she has been really sucking on her 'binky' her nurses thought she was ready to start taking a bottle. Her first bottle was done at 2 AM on 3/25/10 by her primary night nurse and she did so well with it. When I called in to get an update on her I was so excited and they let me give her another bottle at her 5 PM feeding. She took both bottles under 15 minutes which was AWESOME!!! About halfway though her feeding I burped her and she has a HUGE burp. It was so funny to hear such a BIG noise from such a small girl.
Feeding Emma Claire her first bottle
We were so proud of her, she did so AWESOME! Another answered prayer. I was slightly nervous about her getting a bottle and not being ready for it. God answered our prayers and she was so good. She will not get a bottle every feeding, but they are going to try one at least once per shift and we PRAISE GOD for that accomplishment.

UPDATES: Cohen had his surgery yesterday and seems to be doing well from it. He has had a few setbacks, but we know he WILL overcome! Hopefully they will be home together in a few days as a complete family! PRAISE GOD!!

Psalm 92:1 ~ It is good to give thanks to your LORD

Monday, March 22, 2010

3 lbs + First Bath

Mommy and Daddy giving Emma Claire a BATH!!
Now that Emma Claire is over 1500 grams, we can give her soap baths every 3 days and water baths every day. It was so much fun and I think she really enjoyed her mommy and daddy giving her the bath this time. We just soaped her down in her bed and then took another washcloth with water and rinsed her. After her bath we wrapped her in a warmed blanket and she loved it.
Emma Claire getting her hair washed. She has so much hair and I cannot wait to get bows in that hair! I love how her hair looks after bath time, she a little 'Don King' look going on...so cute!

Emma Claire wrapped up after her bath, she was worn out. Yesterday was Matt's day to hold her and she loves it when her daddy holds her. She was so alert after her bath and would just stare at Matt trying to figure it all out. She has her daddy wrapped around those fingers of hers!

Taking her 'binky'! She loves her pacifer
Last week Emma Claire received her immunizations and she had a little rough patch after getting those on Wednesday and Thursday of last week. They had to move her back up to 4 liters of flow after those shots, but this morning I think they might move her back to 3 liters since her blood gas came back really good. Apparently those shots take a toll on these little ones, but she was such a trooper through it all.
She is now getting 25 cc every 3 hours of 29 calorie breast milk. PRAISE God that Emma Claire is still getting breast milk and that HE has increased my supply to keep up with her. Nothing else has changed and we hope she will be off the Vapotherm soon and just on O2 (oxygen) from the wall which is considered low flow. We pray she continues to stay healthy and gain weight. As of this morning, she is up to 3 lbs 6 1/2 ounces.
Tomorrow she is getting her 3 week followup for her eyes. We pray that her eyes continue to mature and she will have no problems. We can tell she is really focusing better and I think she is recognizing us when we are holding her or peering at her while she is in her bed.
Our next milestone will be 1800+ grams, when she hits that, she will be able to go into an open air bed and wear clothes. We are almost there!
God continues to bless us and reveal himself to us each day. We are truly blessed and we PRAISE GOD for that!
Emma Claire sucking on her thumb. Anytime she can get it in her mouth she is a happy camper!
James 1:2 ~ Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds
Prayer Requests: Please keep Cohen, EC's boyfriend/buddy, in your prayers. He is having his repeat follow up swallow study today. The outcome of the study today will determine when he will go home. We cannot wait to get these two together and play. EC will be able to take Cohen on her tractor for rides!
Another baby from Baptist which was transported to Vandy last week is having some pooping issues. They were moved to step down last week and then ended up going over to Vandy. We pray they will be able to go home soon and make their family complete.
Please keep our best friends, the Browns in your prayers. I don't want to go into details, but they just need to be shrouded with God's Peace and Strength right now.

Tuesday, March 16, 2010

Two Months Old

Mommy and Emma Claire
Emma Claire sleeping her in daddy's lap
Emma Claire in her daddy's lap....she is growing so much
Daddy and Emma Claire
On Sunday, Emma Claire turned two months old! It seems like we have not been in the NICU that long and time is flying by! As of today, Emma Claire is 3 lbs 1 ounce (1408 grams) and is down to 3 liters of flow on the Vapotherm. She continues to AMAZE us each day and hopefully she will be off the Vapotherm soon. They have started to give Emma Claire her 'binky' while she eats to prepare her for a bottle feeding in the next few weeks. They want her to get used to sucking and getting her belly full at the same time. Right now, the concern is to get her off the Vapotherm, but they are hoping to start her on the bottle soon and she how she does.
She is still getting 23 cc every 3 hours of breast milk fortified to 29 calories. We love getting to hold her for a little bit each day and I think she looks forward to her mommy and daddy time. Eventhough we cannot hold her for long periods of time, it is so special the time we get to spend holding her. GOD is so GREAT!
We continue to pray that she gains weight and stays healthy. We are so thankful for everyone's thoughts and prayers and we know those prayers are being answered each day. We continue to give GOD all the praises, honor and glory for being with us each day and for everything HE does for us.
A dear friend of ours sends us little saying every couple of days and has done so since I was admitted in the hospital. I love getting them and they are such a blessing to us. These were sent to her when she was going through some things and now she has passed them onto us. I wanted to share the one we received today
~Happy Moments, praise GOD
Difficult Moments, seek GOD
Quiet Moments, worship GOD
Painful Moments, trust GOD
Every Moment, thank GOD~

Saturday, March 13, 2010

Kangaroo Care

Emma Claire sleeping soundly
Emma Claire stretching while laying in Daddy's lap
Daddy holding Emma Claire
Mommy and Emma Claire
Mommy and Emma Claire during Kangaroo Care
Since Emma Claire is now down to 4 liters of flow on her Vapotherm we are able to do skin to skin care called Kangaroo Care. It was great to be able to sit and hold her for more than just a few minutes each week. We can do this each day with her and it was so much fun! Matt did not do the skin to skin contact, so he just held her in front of him. We cannot believe how big she is getting. Emma Claire now weighs 2 lbs 14 3/4 ounces (1329 grams) and 15 inches long! PRAISE GOD!
She is such a big girl and growing each and every day.
Emma Claire is now getting 23 cc every 3 hours of breast milk fortified to 29 calories. Today they discontinued her Lasix, Sodium and Potassium which is awesome. They had her on the those meds since her PDA was still open, but they have not heard the PDA/murmur in over a week....we serve an AWESOME GOD!!!
We continue to give GOD the glory for everything he has done for us and her. She continues to grow and stay healthy and we continue to pray for her weight gain. We just keep marking off her milestones and our next one will be when she hits 1500 grams, we can start giving her baths in her bed. When she hits 1800 grams, she gets to move up to a open air bed and we will be able to put clothes on her and hold her more. I just PRAISE GOD today for getting to hold her every day now. I can remember back to when I would sit at her bedside and pray for the day I would be able to hold and talk to her. Today was an answered prayer.
Psalm 29:11 ~ The LORD gives strength to his people; the LORD blesses his people with peace

Tuesday, March 9, 2010

A Father's Love

Matt holding Emma Claire for the first time. He is such a proud daddy!
Emma's bow is bigger than she is!
Precious
Our sweet little family
Emma Claire continues to do well. She is now down to 5 liters of flow on her Vapotherm and still around the same amount of O2 (oxygen). She is now getting 20 cc every 3 hours of fortified 29 calorie breast milk.
Her hematocrit level was a little low yesterday and they were going to wait to do a blood transfusion, but since Mom's donated blood was going to go bad on Thursday, they went ahead and transfused her late yesterday and her hematocrit this morning was 40 which was much better. Emma has been doing really good and she has not needed a transfusion since 2/14/10 which was almost a month.
She received a new bed which I call her big girl bed. Her bed she was in, had humidity control and it's own scale, so they never had to take her out of the bed unless she was getting a new one. Her new bed does not have those things and now when she gets weighed at night, they actually put her on a scale and we now get a more accurate weight as her other bed would round to the nearest 10th of a gram.
All of the doctors which were there when she was born are back and they cannot believe how much she has grown. They are all happy with her progress. I was looking back and so much has happened and Emma Claire HAS come such a long way and before we know it, we will be bringing her home...PRAISE GOD!!! As of today, we have spent 51 days in the NICU and it seems like it has really flown by. It will be so nice to go home, but when you are in a routine of going down there everyday and getting to see all of the staff, it will be bittersweet when we do come home and not see our friends we have made during our stay. They are such AMAZING people!!
God has truly blessed us and he continues to be with us each and every day. I am so thankful for all of our family and friends which keep us in their thoughts and prayers daily.
Hebrews 11:1 ~ Now faith is being sure of what we hope for and certain of what we do not see

Saturday, March 6, 2010

Our Little Grower

Our little family...Matt cannot deny this child
Emma received all new tubing for her Vapotherm and a new feeding tube, so we always try to take pics of her and us when she is outside her little isolete. She has better color than I do!


Emma Claire is getting bigger each and every day. PRAISE GOD!!! She is up to 2 lbs 9 ounces (1170 grams). She is turning into a little chunkie monkey! Today they turned her down to 5 liters of flow per minute on her Vapotherm and she continues to stay down around 26 to 28 percent O2 (oxygen). Emma Claire is now getting 20 cc every 3 hours of 29 calorie breast milk. She was not having as many poopy diapers and I kept asking about that for the past day or so and then today when we got to the hospital she had a massive blowout diaper and then two more proceeded it. I guess she taught me to ask about those diapers!


I know every day God continues to give her strength and keep her healthy. Again, we cannot thank the staff enough for her care. In my opinion, they are the BEST and we know they were/are put in our path for a reason and we are so blessed to have them caring for our sweet Emma Claire!


I am still pumping and now about to move to my second box in the deep freezer at the hopsital. I would have never thought that I would start to fill up a second box or even a first box at the hospital. God continues to answer those prayers to increase my production and we are so thankful!


Emma does miss Cohen (her boyfriend), but we got to spend lunch with his parents yesterday and it was wonderful to get to see them and catch up on the happening with Cohen and their new digs at Vanderbilt. What a wonderful day it will be to have both of these sweet babes home and be able to get together outside the hospital environment! Please continue to keep them in your prayers that he will get to go home soon.


UPDATE on PDA: The pediatric cardiologist came yesterday to do a heart ultrasound (ECHO) on Emma and he said the PDA is almost closed...PRAISE GOD!!!! We continue to believe it will completely close on its own and she will not have to have surgery.


I saw this on a church sign on the way to mom and dad's the other day and I thought how fitting it is to our lives: Tell your storms how big your God is. How true this is, sometimes we let our storms take over our lives but we can always remember this and tell those storms how BIG our GOD is and he will prevail and overtake those storms!

Monday, March 1, 2010

NICU Fun

I know, I know....title sounds like an oxymoron. There are two things you learn real quick in the NICU, we all love to talk about food and how much we all love to eat and you better learn to laugh. In all honesty, there are some very tough days in the NICU, but there are always more good days and that is what you have to learn to focus on and use laughter as a way to cope with what all goes on around you. Below are some pics we took this past weekend. I felt like I laughed all weekend long. Emma Claire's neighbor/boyfriend, Cohen, has the funniest parents! I promise y'all we laughed so hard at times, I thought I was going to pee my pants and I think it is important to share our fun with our cyber friends. Can you believe Emma already is going after the guys! Everytime we see her in the afternoon it looks like she is trying to make her way over to his bed to hang out! He is the cutest ever and his parents are becoming good friends of ours. These are just a few of the nurses and RT's working this weekend. It all started with Matt wearing his trucker Farmall cap and sunglass and then you know we had to take it one step further with getting everyone to pose with our props! Their names have not been revealed to protect the innocent!



I will write about this picture....I have a new found love of Mrs. Fields cookies and especially those with icing. There happens to be a Mrs. Fields and Starbucks right next to each other in the hospital and the lady who works them both, knows us by now! She always asks about Emma and how she is doing...anyways...they were out of iced cookies so I asked her if she would make three sandwhiches out of chocolate chip cookies. When she brought the box back with the three sandwhiches, the box probably weighed at least 10 lbs and I am not kidding! I had to scrape off the icing there was so much, but they WERE SO GOOD! Hannah wanted a cookie and this is what we brought her back and then Matt and I each had one...so much for trying to loose weight last week.


All in all, we did have a good weekend and I cannot express enough how thankful we are for the staff (all of them) which take care of her. They are hilarious and love to have a good time which makes the stress much less. We are thankful for the parents we continue to meet and their support. I feel like we need to have a party, when one of our buddies gets discharged, those are the BEST days! Our lives will be forever changed by this experience, it was one I was not planning on, but one I will never forget. God is with us each step of the way and PRAISE HIM for that!
Oh, I have an update on Emma after chatting with her nurse today: she is up to 2 lbs 4 ounces (1020 grams) and now getting 17 cc every three hours! AWESOME!!!

Proud Momma

Her RT and nurses came up with this for her yesterday! How precious is that BIG bow and hat! I love it

Emma sitting up during her breathing treatment


Getting to hold Emma Claire for the first time while her nurse and RT were getting her new bed ready
Emma continues to do well on the vapotherm. Her blood gases are so much better on the vapotherm than they were on the ventilator and she is breathing so much better. They have stopped the CPT treatment which was a little vibrator and broke up the mucous secretions since her lungs are now clear and it is no longer needed. Emma is still getting breathing treatments every 12 hours which she likes.

Emma still gets 16 cc every 3 hours. They continue to fortify my breast milk to 29 calories and that is definitely helping with the weight gain. They have not increased her feedings because they do no want to overload her with fluid right now. They have changed her Lasix to every other day instead of every day and she continues to get sodium and potassium every day as well as her vitamins. Her hematocrit levels (red blood cells) have been great, so she has not needed a transfusion since 2/14/10 which is AWESOME!

On her vapotherrm they lowered the number of liter flow she gets per minute. When she was first extubated, she was receiving 8 liters of flow and now she is down to 6 liters. Once she is down to at least 4 liters of flow and not having spells we will be able to do kangaroo care which allows skin to skin contact. Emma Claire is only having about one spell in a 24 hour period which she does not typically drop her heartrate, but she does drop her O2 saturation and they have to give her more O2 to bring it up, but other than that, she stays around 26 to 28 percent O2 which again is so good. We could not be any happier with her continued progress which are HUGE answered prayers!

Yesterday Emma was up to 2 lbs 3 ounces. She had been up to 2 lbs 4 ounces, but lost a few grams. You can definitely tell she is filling out and getting bigger. She loves her belly and it really helps her to breath easier. She is only on her back during assessments and her breathing treatments. We are so blessed by all the staff taking care of her. They have been AWESOME and we can leave the hospital each day knowing she is in the best care.

Please continue to pray for weight gain and growth. Also please continue to lift up prayers that she can stay on the vapotherm and they will be able to continue to lower the liter flow little by little. Her PDA is causing her no issues. Sometimes they hear the murmur and sometimes they do not, so we believe God is closing it and she will not need to have it ligated.

Matt and I are doing well and again our routine is working out really well for us. I continue to be able to get things done around the house and get plenty of rest. I continue to feel God's peace and comfort around us all of the time and I know he is in total control of everything. We are so truly blessed and we serve such an AWESOME GOD!!

Isaiah 40:31 ~ But those whose hope is in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.