Today was a pretty big day for the girls. Claire has graduated from her nasal cannula and is breathing completely on her own now. Actually, they decided to take her off of it last night after Joe held her for a while. She's done great without it since. Lily tried to go off of hers for a short while, but they decided to put her back on. Hopefully she decides to forgo hers soon too!
Tonight Joe and I will give Lily her first bath. She is on full feeds for her size now, so they were able to remove her IV. They put an IV in the other day because they had to remove her PICC because it wasn't looking well. I'm so glad to see both go, and I'm sure she's feeling more comfortable now. Once Claire gets to full feeds her PICC can be removed, but she has a few days before that will happen. Lily is on 5 ml/hr of breast milk and Claire is now on 3 ml/hr. Every day they have increased feeds and both have responded well-- which is why they can continue to slowly increase them until they reach full feedings. Since Claire is not on full feeds and because they want her to gain weight, they add in extra calories.
Last night Joe and I were able to hold both girls at the same time. It was so great to have them both out at once. The nurse said that once they get rid of a couple of lines, I will be able to hold them both at the same time... I can't wait to see how they respond when they are close together again-- its going to be a very special moment.
Sunday, April 29, 2012
Saturday, April 28, 2012
.JPG)
.JPG)
.JPG)
.JPG)
Friday, April 27, 2012
"An Emotional Roller Coster"
Ever since day one everyone (doctors, nurses, other NICU parents) told us what an emotional roller coster being a parent of a preemie is. We have definitely learned what they meant. This morning we learned that Claire's creatinine went up to a 3.1. This was very unexpected as it had been dropping slowly for the past couple of days. The neonatologist also said that he did not expect to see the rise, and that they would test it again in the evening & again in the morning. It weighed on us all day.
This evening Joe and I (and Zane) went back to the hospital and waited on the labs to come back. We finally were told that her creatinine had dropped to 2.9. It was such a relief to hear that it is coming back down, and hopefully tomorrow brings us another drop. I think we'll sleep much better tonight knowing that it has come down slightly.
On a positive note, I was able to hold Claire for the first time today. Feisty little Claire was so calm the whole time I was holding her... it was amazing to finally have this time with her! Lily had her turn this evening too. I will post the photos tomorrow.
This evening Joe and I (and Zane) went back to the hospital and waited on the labs to come back. We finally were told that her creatinine had dropped to 2.9. It was such a relief to hear that it is coming back down, and hopefully tomorrow brings us another drop. I think we'll sleep much better tonight knowing that it has come down slightly.
On a positive note, I was able to hold Claire for the first time today. Feisty little Claire was so calm the whole time I was holding her... it was amazing to finally have this time with her! Lily had her turn this evening too. I will post the photos tomorrow.
Thursday, April 26, 2012
A Good Day
Tonight's update is going to be fairly short as I'm exhausted tonight, but didn't want to skip posting! The girls had a great day today.
Claire's creatinine dropped from a 3.5 to a 2.7. Her BUN (which has also been high) dropped too. The neonatologist is very pleased with this and is confident that the numbers will continue to drop. Both girls also had their breast milk increased... hopefully they will start gaining a little more weight soon. Claire is now 1 lb 10 oz and Lily is 2 lbs.
Lily had a good day too, I was able to hold her for quite a while this afternoon. Tomorrow is Claire's turn to be held-- I'm so excited to finally get to hold her!!
*Late last night we were told that Lily's PICC line was removed because it had clotting in it. They don't think her leg has a clot because the end of the needle had no clotting & because her leg looks okay. It may or may not be put back in tomorrow... the nurse said she may be on a high enough feeding to not need it anymore.
Claire's creatinine dropped from a 3.5 to a 2.7. Her BUN (which has also been high) dropped too. The neonatologist is very pleased with this and is confident that the numbers will continue to drop. Both girls also had their breast milk increased... hopefully they will start gaining a little more weight soon. Claire is now 1 lb 10 oz and Lily is 2 lbs.
Lily had a good day too, I was able to hold her for quite a while this afternoon. Tomorrow is Claire's turn to be held-- I'm so excited to finally get to hold her!!
*Late last night we were told that Lily's PICC line was removed because it had clotting in it. They don't think her leg has a clot because the end of the needle had no clotting & because her leg looks okay. It may or may not be put back in tomorrow... the nurse said she may be on a high enough feeding to not need it anymore.
Wednesday, April 25, 2012
One week down!
Lily and Claire turned one week old today-- it's definitely been the craziest week of our lives. It feels good to have made it through week one though! The girls also turned 29 weeks gestational age yesterday.
Claire's creatinine level dropped from 3.8 yesterday morning, to 3.5 today! Seeing this number go down is the best feeling in the world. The neonatologist said that now she is peeing a LOT. So, her kidneys are still learning what to do... they put her on extra fluids today and increased the temperature in her bed to try and even things out. They don't want her to get too dehydrated. She's still doing very well on her nasal cannula, and was on room air for a large part of the day.
Lily is still very stable. Her head scan did show a grade 1 brain bleed, which Dr. Zach said is more like a bruise. He isn't overly concerned about it, and they are seen quite often in preemies. They will, of course, watch to make sure it doesn't turn into a larger bleed. She is still doing fairly well on her nasal cannula. The nurses have to adjust her oxygen every so often, but overall is doing just fine.
On a side note, I think tomorrow I'm going to find Joe a nursery rhyme children's book... I caught him singing the Notre Dame fight song to Lily. We can't let that happen.
Claire's creatinine level dropped from 3.8 yesterday morning, to 3.5 today! Seeing this number go down is the best feeling in the world. The neonatologist said that now she is peeing a LOT. So, her kidneys are still learning what to do... they put her on extra fluids today and increased the temperature in her bed to try and even things out. They don't want her to get too dehydrated. She's still doing very well on her nasal cannula, and was on room air for a large part of the day.
Lily is still very stable. Her head scan did show a grade 1 brain bleed, which Dr. Zach said is more like a bruise. He isn't overly concerned about it, and they are seen quite often in preemies. They will, of course, watch to make sure it doesn't turn into a larger bleed. She is still doing fairly well on her nasal cannula. The nurses have to adjust her oxygen every so often, but overall is doing just fine.
On a side note, I think tomorrow I'm going to find Joe a nursery rhyme children's book... I caught him singing the Notre Dame fight song to Lily. We can't let that happen.
Tuesday, April 24, 2012
April 24, 2012: Day 6.
Today was a good day. Lately we've learned to appreciate the little things & to really not take for granted good days... especially days when the girls are doing well! This morning I received a call from Dr. Zach, a neonatologist, who informed me that Claire's creatinine levels dropped from a 4.0 to 3.8. Any drop in her creatinine is a huge deal and a huge step in the right direction. Hearing this made our day!
Lily had dropped weight earlier this week. She went from 2 lbs 3 oz (birth weight) to 1 lb 9 oz. Today her weight was 1 lb 15 oz. She also upped her feeding to 1.5 ml an hour of breast milk. Claire is on the same feeding that was set on Sunday, 0.5 ml an hour. Tomorrow she will likely go up a little more. Claire is off phototherapy and Lily is back on it. This is normal, and we were told the other day it would probably happen. Both girls are doing very well with their breathing. Lily has been on a nasal cannula for a couple of days, and as of tonight Claire is also on the nasal cannula. It is so nice to finally get to see their faces! They are both breathing almost all on their own, and only relying on oxygen very minimally. Tonight Joe was able to hold Lily for the first time. He was so nervous beforehand but it went great & she seemed to love her time with her daddy.
The nurses keep telling me how much they love the girls & how feisty little Claire is, even when she was struggling a bit and even though she's the smaller of the two. Lily has been so stable and reassuring for us. We definitely have two fighters; we are so proud of their progress!
Lily had dropped weight earlier this week. She went from 2 lbs 3 oz (birth weight) to 1 lb 9 oz. Today her weight was 1 lb 15 oz. She also upped her feeding to 1.5 ml an hour of breast milk. Claire is on the same feeding that was set on Sunday, 0.5 ml an hour. Tomorrow she will likely go up a little more. Claire is off phototherapy and Lily is back on it. This is normal, and we were told the other day it would probably happen. Both girls are doing very well with their breathing. Lily has been on a nasal cannula for a couple of days, and as of tonight Claire is also on the nasal cannula. It is so nice to finally get to see their faces! They are both breathing almost all on their own, and only relying on oxygen very minimally. Tonight Joe was able to hold Lily for the first time. He was so nervous beforehand but it went great & she seemed to love her time with her daddy.
The nurses keep telling me how much they love the girls & how feisty little Claire is, even when she was struggling a bit and even though she's the smaller of the two. Lily has been so stable and reassuring for us. We definitely have two fighters; we are so proud of their progress!
Monday, April 23, 2012
The world of the NICU
The Neonatal Intensive Care Unit can be an emotional roller coster. The past five days have been so crazy that it's hard to differentiate what happened on which day. Our hardest day was Saturday, when we were told by a neonatologist that they were unsure if Claire's kidneys were working... or if they ever would work. If her kidneys don't work, she would almost positively be too small for dialysis. Claire's kidneys have been the hurtle we've been hit with the hardest. Aside from her kidneys, both girls have been doing very well. On Saturday, April 20th we decided to have them baptized. It was a very special moment for our family. It was especially nice because we were able to have each set of Godparents there even though it was put together on short notice.
Lily and Claire both started off on a ventilator. As of today, Lily is on a nasal cannula doing almost all breathing on her own. Claire is on CPAPP and like her sister, is breathing almost completely on her own. Yesterday they started taking breast milk, which is also a great step. We're hoping that they can move into a twin room soon... it will be so nice to have them share a room and be together again!
On Sunday the 22nd I was able to hold Lily for the first time. It was a little intimidating with all of her wires and whatnot, but it was the best feeling in the world. She kept her eyes open for a long time and while I was holding her, her breathing increased and she hardly needed oxygen at all. When our time was up, she cried a little bit... I'm so excited to continue kangaroo care with her & to soon be able to hold Claire.
Like I mentioned earlier, our greatest hurtle so far are Claire's kidneys. Her creatinine levels have been high and getting higher, so we're hoping and praying that it starts to lower soon. The creatinine levels tell us if her kidneys are filtering and doing their job. Please continue to keep Lily and Claire in your thoughts and prayers. We have a long road ahead of ourselves and the support from our family and friends has been greatly appreciated. Thank you, thank you, thank you! We'll continue to update as often as possible.
Lily and Claire both started off on a ventilator. As of today, Lily is on a nasal cannula doing almost all breathing on her own. Claire is on CPAPP and like her sister, is breathing almost completely on her own. Yesterday they started taking breast milk, which is also a great step. We're hoping that they can move into a twin room soon... it will be so nice to have them share a room and be together again!
On Sunday the 22nd I was able to hold Lily for the first time. It was a little intimidating with all of her wires and whatnot, but it was the best feeling in the world. She kept her eyes open for a long time and while I was holding her, her breathing increased and she hardly needed oxygen at all. When our time was up, she cried a little bit... I'm so excited to continue kangaroo care with her & to soon be able to hold Claire.
Like I mentioned earlier, our greatest hurtle so far are Claire's kidneys. Her creatinine levels have been high and getting higher, so we're hoping and praying that it starts to lower soon. The creatinine levels tell us if her kidneys are filtering and doing their job. Please continue to keep Lily and Claire in your thoughts and prayers. We have a long road ahead of ourselves and the support from our family and friends has been greatly appreciated. Thank you, thank you, thank you! We'll continue to update as often as possible.
Welcome to the World Lily Grace and Claire Sophia!
On the morning of Wednesday, April 18th I woke up to my perinatologist doing his morning rounds. He asked how things were going, and I told him that I was okay but not feeling Baby B (Claire) move much... this wasn't uncommon because of her lack of fluid, but something felt wrong that morning. He ordered a biophysical profile and said that a tech would be in later. A biophysical profile rates the baby 0-10, ten being the best grade. It ranks the babies movement, tone, fluid, and practice breathing. Both girls had a biophysical profile done three days prior and both passed well. The tech finally came in a little after 5:00. I knew almost immediately something was wrong, and when I asked I was right. Claire scored a 0 out of 10 on the biophysical profile. The tech said she was going to contact my doctor(s) ASAP and they would determine the plan of care.
Shortly after, I was told that I would be going in for an emergency C-section. It was so scary going from a laid back day to prepping for surgery. I called Joe and he was there within 15 minutes... our parents also arrived before they took me to the OR. I had a completely natural labor/delivery with Zane, so I was unsure of what to expect. Luckily, I have a great OB and my favorite resident was there. They talked me through everything & Joe did great with the whole surgery. Lily Grace was born first, at 8:24 pm weighing 2 lbs 3 oz. Claire Sophia was born at 8:25 pm and weighed 1 lb 6 oz. I couldn't see them because of the covering, but I got to see Joe's face and reaction to seeing them, which was priceless. I was told Lily came out with her eyes open and moving, but not crying. When Claire came out, she cried & had the sweetest and softest cry. It was the greatest sound in the world.
I was not able to see the girls right away because they were immediately taken to the NICU. I was taken to recovery. When I was finally able to leave recovery and go upstairs to my room, I was unable to stop and see them at the NICU because they were still placing lines. We went upstairs and I stayed up until 3 am. I wouldn't sleep until I saw them. I was finally was taken downstairs to see them, and I couldn't believe how tiny, perfect, and beautiful they both were. Lily and Claire were already loved so much.
(Joe before the c-section)
Shortly after, I was told that I would be going in for an emergency C-section. It was so scary going from a laid back day to prepping for surgery. I called Joe and he was there within 15 minutes... our parents also arrived before they took me to the OR. I had a completely natural labor/delivery with Zane, so I was unsure of what to expect. Luckily, I have a great OB and my favorite resident was there. They talked me through everything & Joe did great with the whole surgery. Lily Grace was born first, at 8:24 pm weighing 2 lbs 3 oz. Claire Sophia was born at 8:25 pm and weighed 1 lb 6 oz. I couldn't see them because of the covering, but I got to see Joe's face and reaction to seeing them, which was priceless. I was told Lily came out with her eyes open and moving, but not crying. When Claire came out, she cried & had the sweetest and softest cry. It was the greatest sound in the world.
I was not able to see the girls right away because they were immediately taken to the NICU. I was taken to recovery. When I was finally able to leave recovery and go upstairs to my room, I was unable to stop and see them at the NICU because they were still placing lines. We went upstairs and I stayed up until 3 am. I wouldn't sleep until I saw them. I was finally was taken downstairs to see them, and I couldn't believe how tiny, perfect, and beautiful they both were. Lily and Claire were already loved so much.
Prior to Lily and Claire's Birth...
My pregnancy with Lily and Claire was completely normal. Both my OB and perinatologist said that everything was going great at 23 weeks. I was told that I should come back for a visit in a month, but that both girls were right on target and both were weighing equally. Twins are always considered a high risk pregnancy. Identical twins carry an even higher pregnancy risk due to the fact that the babies are sharing a placenta. But, at 23 weeks the babies were the same size, so everything seemed to be going perfectly.
That perfect pregnancy changed very quickly because at 25 weeks I started feeling, "off." Something didn't seem right, and I called to see my OB that Friday. He was out of his office, so the nurse said that if I started having contractions or bleeding to go to the ER. Well, I wasn't having contractions or bleeding, so I decided to wait until Saturday to see how I felt. On Saturday morning I woke up again feeling like something was wrong. This time I also felt pressure, so I called Bergan's Maternity line and after talking to a nurse for a while, was told to come and get checked out. As I was getting ready to leave my water broke & we headed straight for the hospital.
After arriving to the hospital, my contractions were 1-2 minutes apart. It was confirmed that my water broke and I was given magnesium (to try and stop contractions) and a steroid shot (to help mature the babies lungs). Thankfully, after many shots and medicine, my contractions slowed down and they were able to stop labor. Until Tuesday morning, I was still having minor contractions and leaking amniotic fluid. Tuesday morning I finally saw my perinatologist for an ultrasound. I was told that baby A's water was extremely high and Baby B had barely and fluid at all. It was later confirmed that the girls had Unequal Placental Sharing. Baby B was also at a lower weight than Baby A. I had to have a procedure done called Amniotic Reduction. With this, they took a long needle and inserted it through my belly and into Baby A's sac. They removed 6 liters of fluid, and close to 10 pounds from her sac. I felt immediate relief (no more back pain or pressure, and it was easier to breathe). I was told that I would be monitored closely and likely would have to have more reductions done.
Subscribe to:
Posts (Atom)