2 months, 4 weeks, 1 day
Adjusted Age: 6 days
Eden had her echocardiogram today which showed that she still has pulmonary hypertension (for an explanation of PH in preemies, see this link http://nicu-info.blogspot.com/2009/07/nicu-persistent-pulmonary-hypertension.html ). This is very serious and we are worried again. A Pulmonologist will see her this week and we will determine a course of action. PLEASE PLEASE pray that Eden's PH will resolve itself without having a trach. We truly need a miracle right now. Thank you for all the prayers.
Sunday, October 31, 2010
Saturday, October 30, 2010
Happy Halloween!
2 months, 4 weeks
Adjusted Age: 6 days
Let me introduce future Neonatologists, Drs. Reagan and Eden Hedin! However it might be slightly confusing to their patients because they're identical twins... The NICU can be draining and emotionally challenging so we decided to have some fun today getting the girls dressed in their Halloween costumes. Eden was a trooper and did fine with hers, Reagan cried almost the entire time, however we found out later that was because she had gas. The girls were so cute and had a lot of NICU staff visitors admiring their 'Build-a-Bear' costumes. A special thank you to RN's L and S for making it fun for us. Scott and I enjoyed smiling and laughing at our cute little angels versus dealing with the stress and anxiety that occurs on a daily basis.
Our girls have come to a standstill with their respiratory status. This is especially frustrating and heartbreaking for Scott and I. Eden is still on the ventilator and doing well, but she has an echocardiogram scheduled for Monday to check for the pulmonary hypertension that they found on the last one. If she still has pulmonary hypertension we will have to consult a Pulmonologist about a tracheostomy (trach) to aid in pulmonary support for her. We want so much for her to be a typical baby and it breaks our hearts to even think about this as an option. We are PRAYING so hard that God will heal her lungs and she will not have to get the trach. Reagan is still breathing too fast and her Neo has decided to start her on another round of steroids. We are praying that this will work and that her lungs can heal as well.
We need lots of prayer this week, PLEASE PLEASE pray that Eden's echo will not show any signs of pulmonary hypertension and that Reagan's next round of steroids will help heal her lungs. These little girls need new lung tissue growth so badly to be able to make any progress. Thank you to everyone for praying for us and a special thank you to our EBC friends who provided us with meals last week. It was so wonderful to have a hot meal when we were too tired to prepare anything.
Sunday, October 24, 2010
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.
Thursday, October 21, 2010
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!
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!
Tuesday, October 19, 2010
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.
Thursday, October 14, 2010
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.
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.
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