Bittersweet

2 months, 3 weeks, 1 day
Gestational Age: 40 weeks (or zero)

Today was bittersweet... it was my original due date. Scott and I were so excited in February when we found out I was pregnant and my due date would be October. We waited for months for this day to come, counting down the weeks, planning for our baby (little did we know babies)! I feel sad that I'm not rolling myself into the delivery room to have our little one's, but I also feel happy to have had so many amazing experiences with out miracle babies already. We have been able to see them grow, cuddle with them, smell their hair, see them smile, give them their first baths and calm them when they're sad. We love our girls more than the world itself and would do anything for them!! We know that this experience is happening for a reason some maybe that haven't been revealed to us yet but we also know that God will guide is to what it is we should be doing with this experience.

Eden is doing well, she is still on the ventilator but breathing much better now. She responds very well to her nebulizers and her airways are so much clearer when she receives them. Her 02 needs are decreasing everyday and she's tolerating stimulus/touch better. Now that she's full term having the vent is difficult because she can't cry out loud. We can see her eyes well with tears and her face get red but nothing comes out of her mouth, this absolutely breaks our hearts. We hate seeing her like this and do our best to calm her down when she's crying. PLEASE, PLEASE pray that she will get off the ventilator very soon and that her lungs are healing quickly.

Reagan hit 6 lbs today!!! What a big girl! We get to cuddle with her everyday and she loves falling asleep on her Dad's chest- she has him wrapped around her little finger.

I go back to work this week, which will be a challenge to juggle working and seeing the girls. Luckily my schedule will only be 3 days per week. I'm grateful to my employer/manager to be able to do this while the girls are in the NICU. It will be very difficult to be away from them during the days so please pray for me to have strength.

A HUGE step backwards...

2 months, 2 weeks, 5 days
Gestational Age: 39 weeks, 5 days

Today was the toughest day thus far, our hearts are aching with how difficult it has been. Eden was having trouble breathing all day, she was almost exclusively needing 100% oxygen when her MD decided that she needed to be reintubated (put back on the ventilator). He said she was so close to falling off the cliff, and he hated to have her struggling for every breath. Her reintubation was not easy because she has an anterior airway and her energy reserves were low to begin. She spent 4 weeks off the ventilator doing so well with her nasal cannula and her O2 needs were low, so we just don't know why this is happening. She is doing better now that she is on the ventilator. We however have been pushed to the breaking point. I seriously don't know how much more we can handle. I personally feel like my heart is crumbling into a thousand pieces, this setback is so huge we just don't know when she will be coming home.

PLEASE PLEASE pray for Eden right now, she has a LONG road ahead of her. Also pray for us that we can depend on God 100% and that we won't completely breakdown.

Reagan is doing well, she is needing less O2 and she is growing a ton!

The lung project continues

2 months, 2 weeks, 3 days
Gestational Age: 39 weeks, 2 days

Our girls had another round of steroids for their lungs on Saturday, Sunday and Monday and we prayed that this would be all that was needed to get them over this oxygen battle. Unfortunately their chest x-rays were not as improved as their Neonatologist expected. This ultimately means that they won't be coming home anytime soon. This news breaks our hearts, but we know that God has a reason for this and He will continue to work miracles in our little girls and change Scott and I for the better through this difficult journey.

Despite the difficult news, we also had a fun week. Both girls tried out the baby swing, Reagan loved it and spent over an hour in it! Eden liked it for about 10 minutes... no big deal, we'll try again soon. Eden had her first bath!! One of her RN's noticed that her feet were stinky, after 11 weeks she definitely needed a real bath (not just a sponge bath). She hated it- cried almost the entire time. It was really cute though and it was fun for Scott and I. We are also experiencing things that parents with newborns at home are experiencing. Our girls have become fussy at certain times and we are becoming creative with ways to calm them down. We are also juggling two crying babies, so that is a challenge. We love the idea of acting like real parents even though our "home" is labeled Rooms 3406 and 3408 and includes bright monitors and cords. Our day will come when we can take both of our little girls home and cuddle them with no cords or monitors, we just have to be patient and know that God will take care of the rest.

10 weeks is a long time

2 months, 1 week & 5 days
Gestational Age: 38 weeks, 4 days

This week has been tough. Sunday, Oct 10th was 38 weeks which is when my MD's said I would have delivered the twins. It was bittersweet and caused me to be extra emotional, just the thought of knowing that I should still be pregnant...

Eden was requiring more O2 and this had us very worried. She had her eye exam on Monday which showed that her ROP has progressed to Stage 2. The ROP is not yet bad enough to require surgery but we were praying that her eyes would regress to maturity instead of progressing to Stage 2. Her eye exam was very tramatic for her and caused her to have 4 spells in one day. Spells are also termed A's and B's or Apneas and Bradycardias. This is when they stop breathing and their heart rates plummet. These are very common in preemies, but our girls have only had a few. In fact a maximum of 2 in one day previous to Monday. Of course Scott and I witnessed all 4 of these spells. There is nothing more terrifying as a parent than watching your child turn limp and pale and watching her heart rate and oxygen decrease dramatically. The stress, anxiety and fear are overwhelming and it causes pure exhaustion. The RN's see these spells so often that they are perfectly calm and know exactly what to do. Eden was not in danger of anything bad happening, it simply was very uncharacteristic of her to have so many and be so agitated. Her MD came and saw her for the second time in a day and ordered a lab panel, all of which came back negative. We determined the spells were likely caused from the trauma of the eye exam.

Reagan had another eye exam today and her left eye is showing very early signs of Stage 1 ROP. We learned that it can show up later, and they will monitor her with future eye exams.

One of the RN's found an inguinal hernia on Eden's right side this week also. The Urologist came and saw her today and determined that she will need surgery before she goes home. It will be done on both sides because her abdominal wall is so thin in that area that it could easily start on the other side.

Finally, we have both hit a wall with realizing that 10 weeks is a long time. We really thought being in the NICU would get easier and it has in some sense. Our little girls are no longer fighting for their lives everyday, but they are almost full term and acting like newborns and growing very well that it feels like we should be able to pick them up and carry them home. Scott and I are always the optimists, in fact we have always had a peace and calm that everything is going to be OK. However, this week has felt like we're never going to be able to bring them home- its so hard. Driving to the NICU is draining, eating at the NICU is getting old, trying to find time to cook is difficult, and simply having a life that feels so out of balance is just plain hard. Please pray for all of us this week- Scott and I need more patience (as if we don't already have enough) and our little girls need big improvments to even start talking about coming home. Thank you for all the prayers.

Still playing the O2 game...

2 months, 1 week
Gestational Age: 37 weeks, 6 days

We are praying everyday for the girls O2 needs to come down, it sometimes feels like its taking forever and today Eden had a little setback. She was needing a lot of O2 this morning so her MD ordered a chest x-ray which showed "wet lungs". This means that her lungs are holding more fluid than is safe, so he ordered a nebulizer and another Rx to help resolve this problem. She needed to rest today and this is very hard for us because we have been holding her for 1-3 hours everyday. We love them so much and now that we can hold and cuddle them more, it breaks our hearts not to be able to do it everyday.

Current weights: Eden is 3 lbs, 4 oz
Reagan is 5 lbs, 3 oz

Please pray that our girls O2 needs come down and they can begin bottle feeding soon. Thank you for your prayers.

2 pea's in a pod

2 months, 3 days
Gestational Age: 37 weeks, 2 days

Holding two babies at once is.... an armful! Even though they are still little, its amazing how fast your arms fill up. But oh so fun!

We had a busy day today, first of all Reagan hit 5 LBS!!! Wow she is getting to be such a big girl. Eden is sooo close to the 3 lb mark and she should hit it this week! Next, our RN volunteered us for a photo shoot for Children's because our girls are so cute and we're "such a nice family". Scott became the star of the show, I know- hard to believe he would talk candidly about our situation. He was holding Reagan and had video and photos taken for about 15 minutes. Maybe him and Reagan will be on billboards someday... just kidding, not really sure what the photo shoot was for but he was happy to do it. I found that I'm becoming a paranoid Mother, I was panicking wondering if the photographers and producer had foamed up (used hand sanitizer before entering their rooms). They did, but I still wasn't completely comfortable with the situation which I think was evident because they took fewer photos and video of me. Overall though we were happy to do it and I hope that Children's can use the footage for good.

Finally, our wonderful RN L. suggested we hold the girls together! Scott so graciously allowed me to hold them for the entire visit. It was very fun but definitely challenging when my arms are full and one or both starts to fuss and wants their pacifier. It's definitely a two person job! You can see the girls size difference is one of the pictures, and if you look closely also see that they must be identical!

Eden had to switch back to continuous feeds today because the bolus/bottle feedings are still a little stressful for her. She will be working with an Occupational Therapist to help her learn to feed appropriately without dropping her heart rate and O2.

One final note for those who are local, we are beginning our search for a nanny. We would like someone who is skilled and experienced and possibly someone with medical knowledge (RN, LPN, CNA, etc). My schedule will be part-time beginning Oct 24th and possibly increase later. If you know someone looking for a nanny job or even someone who might be interested please let me know. hedinamanda@hotmail.com

2 months, 1 day
Gestational Age: 37 weeks

All things are pretty good with the girls, we don't have a lot to post. They are both on the nasal cannula's all day. Eden is getting bolus feedings which means that she is on a schedule of multiple feedings per day. This will help her get acclimated to a schedule similar to what she will be doing at home. She is bottle feeding periodically and is doing well with that. The RN's say that they are both acting more like newborns with their "fussy" times. Reagan is still on continuous feedings because we are waiting for her lungs to get better and for her to require less respiratory support.
Reagan is 4 lbs, 13 oz
Eden is 2 lbs, 13 oz

We still do not know when they will come home, before they can make their trip to Blaine they will need to 1. breathe 100% on their own without the help of O2 and 2. take all of their feedings by bottle and finally a caveat to this 3. Eden has to be at least 4 lbs.

Thank you for all of your prayers, we truly appreciate it.