The past couple days have been frustrating for Dave & I. On Sunday Emma was taken off CPAP and did well off it through the night. One of her primary nurses, Erin, kept commenting on how good she looked. Durring the day on Monday Emma apparently had a rough day and had many alarms so around 4pm she was put back on CPAP. Dave and I are so proud of Emma for trying so hard, but we cannot help but be disappointed. We want her off the CPAP because that is one huge thing that needs to happen before she can make good progress towards coming home. The hospital also some how ran out of their preemie formula they get mixed with my breast milk for added calories. Not sure how that happens. Fortunately their nurse Marsha was able to work her magic today and get more formula through the Similac rep. However the girls were still short of calories for almost 24 hours. Hopefully the supply from the rep lasts because it sounds like they will not get their order in until after the new year. We got news this morning that Emma's eye exam showed that she has stage 1 Retinopathy of Prematurity (ROP) developing in her right eye. Stage 1 is very mild and very common in preemies. This stage does not cause problems and goes away on its own. However it has a potential to progress to a stage that can cause problems so they will be checking her more frequently. So even though at this point it is mild, it was still another disappointment. And it breaks my heart that Emma has another little bump in her road. I also found out this morning that as of the new year I will need to start paying for Dave, Adalyn & Emma to be on my health insurance and this is no small cost. So to say the least Dave & I are both frustrated. I really hate to be all "woo is me" but we both feel a bit like we cannot catch a break. Don't get me wrong we are so thankful for how God has blessed us and how well the girls are doing, we know it could be much worse, but we are just overwhelmed with all of this.
Enough about that, let's talk about the girls. The girls are doing well, but unfortunately Emma was not ready to be off CPAP yet. Later yesterday afternoon Dr. B decided Emma had been having too many alarms and that she needed to go back on the CPAP. I was reassured by Dr. D that this is not abnormal for her to still need the CPAP and that there does not appear to be anything wrong with her that is making her need the CPAP other than the fact that she is a preemie. Emma tried hard and I am so proud of her. We will get there. It is just hard for me because I love being able to see her whole face with no CPAP on and smother it with kisses. I also know that she cannot make feeding progress on the CPAP and she needs to do that and get off CPAP before she can come home. So mostly I am bummed. But I need to be patient. Emma's feedings are at 10 ml/hour and she is doing well with that. Her weight last night was 3lbs 8oz (1590 grams) and tonight was 3lbs 8oz (1600 grams).
Adalyn is still doing well of the CPAP. Her feedings were increased today to 12 ml/hour. The big news with her is that she hit 4lbs (1810 grams) last night! Way to go Adalyn! Tonight she was 4lbs 1oz (1840 grams). When Dave & I left tonight she was all bundled up and they were trialing her in an open crib...so exciting. Hopefully she stays warms so she can stay that way.
Please pray for Emma that her ROP does not progress further and that it heals. Pray that she continues to develope so that she can come off the CPAP for good soon. Pray that God continue to heal both of the girl's reflux. Pray that He continue to protect then from infection. Join us in praising Him for their weight gain, that Adalyn is in an open crib, and that we had 3 healthy eyes on the eye exam.
I would also like to ask for prayers for Dave & I. Please pray that God help us with our frustrations. Pray that he help us cope with having our girls in NICU as we are both very ready for them to come home and we know it could be a long time yet. Pray that God help us financially with our extra expenses.
Most of all join us in thanking God for our beautiful daughters! Adalyn & Emma we love you so much!
Diabetes monitoring devices
2 years ago
Dave & Abi,
ReplyDeleteWe cont to pray for all of you. May God quite your worries and give you joy,that the time will go fast and the girls will be home soon.
God we are so thankful for your greatness, power and mercy.
I con't to pray from zeph 3:17 for Emma, Adalyn, Abi & Dave
"The LORD your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing."
I love you all and am proud of you all.
We love you so much and wish we could carry your load to give you a break. I am praying too for Abi, for next week with you going back to work. I pray you will stay healthy and you can enjoy taking care of other kids again. Amen
gram/jody
On Eagle's Wings
ReplyDelete"You who dwell in the shelter of the Lord,
Who abide in his shadow for life,
Say to the Lord,
'My refuge, my rock in Whom I trust!"
The snare of the fowler will never capture you,
And famine will bring you no fear;
Under His wings your refuge,
His faithfulness your shield.
You need not fear the terror of the night,
Nor the arrow that flies by day;
Though thousands fall about you,
Near you it shall not come.
For to His angels He's given a command
To guard you in all of your ways;
Upon their hands they will bear you up,
Lest you dash your foot against a stone.
And He will raise you up on eagle's wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold Adalyn & Emma in the palm of His hand. "
~Michael Joncas
(based on Psalm 91)
Thank you so much for sharing your frustrations, joys, fears, specific request. Thank you for trusting us with how you and your family are doing. As part of the family of God we want to support you in prayer and however the Holy Spirit leads us to support you...
ReplyDeleteThe love for your precious girls is so evident, you want the best for them. So does Our Abba Father. When I read your note I was reminded of how God promises to hold each one of us in the palm of His hand, which led me to this song I pray that it blesses you and gives you comfort knowing that God is your refuge.
When you are so tired, frustrated He understands, He has very big shoulders, He can handle all your hurts, fears frustrations.
I am thankful for the special people who God placed around your girls to take care of them, thankful for thier wieght gain, thankful for how God blessed them with loving caring parents.
I am praying
Abi and Dave
ReplyDeleteMay the peace of God wrap itself around both of you. It can be so hard to see the light at the end of the tunnel when you are still walking through but it is there. Prayers for all of you are continuing
Kim Holwerda
Everyone needs a hug. Today let God "hug" you with His word. Psalm 34:4,6 I sought the Lord and he answered me; He delivered me from all my fears. In my despiration, I prayed, and the Lord listened. and Mathew 6: 33-34 Jesus said, "The thing you should want most is God's kingdom and doing what God wants. Then all these other things you need will be given to you. So don't worry about tomorrow." Romans 5:3-4 says We...have joy with our troubles, because we know that these troubles produce patience. And patience produces character, and character produces hope. Our prayers are with you all and may God "hug" you and may you focus on the hope that produces joy during the hard times. God's blessings.....Faith Hope Love
ReplyDeleteawh Abi....I know it is hard and it is so easy to say "it is the premie way" when they are your girls....they both have been doing so so well....remember to not look too far ahead but look at where you have been and wow what a wonder God has done.....He is doing it is way...and sometimes we question the how and don't understand...but He knows what He is doing....Everything will work out...take each day at a time and know that there are many many people Praying for all four of you....Emma and Adalyn are doing oh so well.....take care of yourself and Dave.....take a minute each day and just close your eyes and think of what you have and y ou will have a smile on your face and all will be well...love ya, char and her girls...(her emma laying at her feet)
ReplyDeleteYou don't know me. I ran across your blog through another one. I just wanted to let you know I am praying for you and your little ones and will ask my bible study group in Frankenmuth to pray for all of you also.
ReplyDelete