Day 56: Lots of changes

Thank you all for you prayers! We had a much better day today. We had a care confrence today with Dr. BR and it was very encouraging. We have never heard him so enthusiastic and optomistic before. He said that if we would have asked him when the girls were born if he thought there was a chance they could go home without oxygen he would have said no. He said he has not seen 25 weekers go home without oxygen before. However he said that he feels pretty sure that as long as there are no major complications neither of our girls will need to go home on oxygen. That is awesome! He also thinks that both girls are on track to come home at or even before their due date. I am going to try plan on the due date still so that I do not get my hopes up. He also said that he would be very suprised if Emma's ROP progressed to anything that would affect her sight at all. At our care confrence we talked about Emma's need for CPAP. He feels that she is ready to be off it and said that he thinks the reason it did not work out monday was likely bad timing. So he talked us into trying her off CPAP again. He had a good talk with the other neonatologist that was on as well as the girl's nurse so that no one "jumps" into putting her back on it. He wants to make sure that she has a fair chance this time to prove herself. So we are praying that Emma gets to ring in 2010 CPAP free with Adalyn. Emma's weight tonight was 3 lbs 11 oz (1665 grams). Earlier today they started compressing Adalyn's feedings over 2.5 hours. Dr. BR said that if she tolerates that they will likely go down to 2 hours tomorrow. He also decided to move Adalyn's feeding tube from an OG to an NG (in her nose instead of her mouth). As long as everything goes well we get to try give her her first bottle this weekend. I have been able to let her nuzzle at the breast twice, but she does not do a ton yet. Adalyn is still in an open crib and doing great maintaining her temp. Her weight tonight was 4 lbs 3 oz (1880 grams).

Some news about the frustrations I was having yesterday. The hospital got their formula order in so we do not have to worry about them running out of that again any time soon. Also I got a call from one of the financial counselors at Spectrum Health and they will pay the premium to have the girls stay on my health insurance. The girls have Medicaid because they are in the hospital over 30 days so I was going to drop them of my insurance and let Medicaid be their primary. However, it benefits the hospital in terms of reimbursement for them to have a private primary insurance so that is why they are willing to pay that premium. That is awesome because that takes away part of that financial burden from Dave & I.

Holy Spirit,
Thank you so much for answering so many of our prayers Lord. Forgive us for ever doubting Your presence or wondering if You are still holding us in Your hands. Lord I ask that you please help Emma to stay off the CPAP for good this time. Please give her the strength and maturity that she needs. Lord also give Adalyn the strength that she needs to be able to handle her compressed feedings. Help her to digest her food well and to have minimal reflux. Please continue to help Emma with her reflux so that she can go back to gastric feeds. Father continue to protect both girls from infection, and help them to continue to grown and develop well. Help Emma's right eye to heal and for their to be no progression of her ROP or any additional signs of ROP in her left eye or either of Adalyn's eyes. Lord thank you so much for the many blessing and miracles you have blessed Dave & I with in 2009. Lord we look foward to walking into 2010 with You and our beautiful twins. Amen!

Day 55: Frustration

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!

Day 53: Off CPAP

Emma in her Christmas Eve outfit. I will have Dave post a video of their Christmas outfit.

Adalyn in her Christmas Eve outfit. The onesie says "Who needs Santa, I've got grandparents"

Sorry the updates have not been as regular. We were quite busy with Christmas festivities so unfortunately the blog took a back seat for a couple days. But we are back and doing well. Around 5pm yesterday Emma was taken off CPAP. For the past couple days the nurses and respirtory therapists kept asking why Emma was still on CPAP. They kept waiting and waiting for one of the doctors to try her off. Well yesterday Emma got at least 4 "drinks" through her CPAP. This means a huge build up of water in the CPAP tubes got rapidly shot up her nose. This is not supposed to happen and Emma did not appreciate it when it did. She would cry and retch and alarm and...well it was not pretty and very hard for mom and dad to watch. Needless to say the forth time it happened the respiratory therapist was fed up and called the neonatologist to find out if they could give Emma a break from the CPAP and see how she did. Well Dr. L wanted her taken off of it completely and only put her back on if she was not doing well. So that is what they have done. Emma has done well. She had about a dozen brady alarms last night since coming off, but they were all brief, self-resolved, and she has been maintaining her oxygen saturation on room air. Praise God! Pray that Emma continues to do well off the CPAP, pray that God keep her strong and breathing good so that she does not have to go back on CPAP.

On another note yesterday was again bath day and Emma decided to give me a run for my money. The girls get glorified sponge baths in their isolettes becase they are not big enough to be in an open crib yet. So for the baths we put down some absorbent pads underneath the girls to absorb the water. When I am ready to clean their bunners I take off their diapers and they lay naked until the bunner cleaning has finished. Well, when I took off Emma's diaper in preperation for this she had a big poopy diaper. So I cleaned her up from this, turned to give the diaper to the nurse and looked down to find that Emma had pooped again. All over the pad, and the seconds she had were enough for her to stick both feet in it as well as drag all her wires through it. Good thing she is so cute :) It took me forever to get that cleaned up and the hardest part was figuring out where to start. I had just gotten it all cleaned up and put a new pad underneath her when she pooped again. Thankfully I saw it coming this time so we were able to keep her feet and wires out of it this time. What a little stinker...quite litterally! Thankfully Adalyn's bath was much less uneventful.

Adalyn continues to do well off the CPAP and on room air. Her feedings are going at 11 mL per hour and she is tolerating that well. Hopefully sometime this week they will try compressing her feedings again. Her weight last night was 3 lbs 14 oz (1760 grams) and her length was 16 3/4 inches.

Emma's feedings are still at 9.5 mL per hour and for the most part she is doing well. She still retches at times and will spit up small amounts of gastric contents, but the nurses are wondering if this will improve off the CPAP. The CPAP gives her really thick saliva and lots of it which she gags on which makes her retch which at times makes her spit up. So maybe without the CPAP she will not gag as often and maybe not retch/spit up as often either. Emma's weight tonight was 3 lbs 7 oz (1565 grams) and her length was 16 1/2 inches.

Please continue to pray that God help Adalyn and Emma grow and develop well. As I asked above, pray that Emma continues to do well off CPAP so that she can stay off. Pray that God helps them to have less alarms each day. Continue to pray that He protect them from infection. And please join us in praising Him for their wonderful growth and that they are both off CPAP!

I also just want to take a moment to thank God for blessing this family with a great first Christmas. And I want to thank Him for such a wonderful and supportive husband. I cannot imagine going through any of this without him.

Day 51: Merry Christmas!

Just a quick post for right now to wish everyone a Merry Christmas and let you know the twins are doing well. Adalyn's weight tonight was 3 lbs 12 oz and Emma's was 3 lbs 4 oz.

Dear Lord,
Thank you so much for the the many gifts you have blessed us with this Christmas. Thank you for the amazing blessing that Emma & Adayn are to us every day. Please Lord continue to help them grow bigger and stronger and more developed each day. Please heal their reflux and continue to protect them from infection. In your awesome name I pray,
Amen!

Day 49: Christmas outfits

Today was bath day again. Once again neither or the girls were real impressed, but overall they did well. After their baths I put them in one of their Christmas outfits. One of the nurses bought them Christmas red onesies that say "who need Santa, I've got grandparents", so cute! I wil post pictures later.

Emma continues to need CPAP. Please pray earnestly that God makes Emma stronger so that she does not need the CPAP anymore. I ask that you also boldly ask God to heal Emma's reflux. Both of these are hurdles for her right now that really need some prayers to help her overcome them. Her feedings are still the same. She continues to have too many alarms to come off CPAP, but thanksfully they are all brief and self-resolved. Emma's weight tonight was 3 lbs 2 oz (1425 grams). Adalyn continues to do well off the CPAP. They increased her feeds today to 10.5 mL/hour. She is still occassionally spitting up so they are waiting to start compressing her feeds. Oddly enough her spit ups seem to be at the same time as she poops. Is that because she is working so hard or because even she thinks they stink...we may never know :) Her weight tonight was 3 lbs 9 oz (1630 grams).

Please pray for the requests listed above as well as that God continues to help them grow, develop and be free from infection. Also please join us in thanking God that they continue to do well as well as for their weight gain, praise God!

Day 48: 32 weeks gestation

The girls had a good day today. No changes is feedings. Adalyn continues to do well off CPAP and Emma continues to need the CPAP at this point. Adalyn's weight tonight was 3 lbs 8 oz and Emma's was 3 lbs 1 oz.

Day 47: Exercise

Both girls had a good day again today. Emma is continuing to do well on CPAP. She had less alarms today than yesterday, pray that that trend continues. Her feedings continue at 9 ml and hour, but now it is the same cocktail as Adalyn. 50:50 breast milk and similac special care 30. So now she is at full feeds fo her current weight, big girl Emma! Her weight tonight was 3 lbs 1 oz (1380 grams). Adalyn is doing well off CPAP and on room air. She continues to have brady alarms, but they are quick, self resolved and less than yesterday. Pray her alarms continue to improve. Her feedings are the same. She got to do exercises today with the physical therapist. She did not really like it and tried really hard to sleep through the whole thing, silly girl. Her weight tonight was 3 lbs 7 oz (1570 grams).

Please continue to pray that the girls tolerate their feedings, have less alarms, gow and develop well, and remain free from infection.