I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a preemie with physical challeges or medical issues, I will not be careless with my love.
I will be a better mother for all that I have endured.
I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely.
I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard.
I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes I will be a wonderful mother.
-Author Unknown ♥ ♥
Wednesday, July 25, 2012
Saturday, July 14, 2012
Home!
The girls are now HOME!!! They were released yesterday and we're so glad to have them home with us. As you can imagine, its a bit hectic for the moment, so I'll post a few photos and update later.
Thursday, July 12, 2012
Finally...
Finally the finish line is in sight! We were told today that if the girls gain weight and pass the car seat test, that we can take them home on Saturday. A part of me doesn't quite believe it yet, and may not believe it until Saturday when we're putting them in the car. I didn't know this journey would be so difficult, long, and emotionally/physically exhausting. I have been admitted or visiting the hospital every day since March. It really has been a long time! This week marks 12 weeks since I had the girls and 15 since I was admitted. Needless to say, we will not miss the hospital. I will however miss some of the nurses we've had... the girls have gotten such good care. I can't say enough positive things about it.
Since I have not updated for a couple of weeks, I'll update what has happened with Lily and Claire lately. Lily's blood pressure was high for a few days in a row and they decided to order her a kidney ultrasound. Claire's blood pressure was border line high, so they decided to give her one too. The results showed that Lily's kidneys seem to be fine-- there was question whether one of her renal arteries was smaller than normal but the nephrologist decided it looked fine. Claire's ultrasound showed two small renal arteries, calcification, and overall her kidneys showed up bright. The nephrologist explained to me that the brightness indicated past trauma (and we all know how stressed her kidneys were shortly after birth). The calcification also is a sign of trauma. She reminded me how lucky Claire is and told me that she's going to be just fine. She'll have a follow up in 3 months and is at increased risk for hypertension in the future, but she decided to not do anything regarding their blood pressure since it's just borderline right now. We'll continue to watch it, just in case.
Lily and Claire both have had some issues eating. When feeding them, they would act like they were in pain and not want to take their full feeding by mouth. After a few weeks of this, they decided to order a swallow study. A swallow study takes films of the baby feeding and shows if any of the milk comes back up (reflux). They also thicken the feeding as they are taking pictures to determine what thickness works the best for the baby. It was determined that Claire has moderate reflux and Lily's is a bit less severe. As soon as they thickened their feeding the girls have done so much better. They no longer seem uncomfortable and eat larger amounts. Because this seems to finally be under control, home is right around the corner! We can't wait to finally have some normalcy again... or what will become our new normal at least (with twin babies in the house)! :)
We'd like to thank everyone for the kind words, thoughts, and prayers sent to the girls throughout this time. I cannot count the number of emails, cards, etc I have received from family, friends, and strangers who have been touched by their story. Prayer chains were started in several states and even in a couple different countries. It's pretty neat to think that two little girls, less than 4 pounds total at birth, have made such a difference already & touched so many lives. Joe and I are so blessed to be able to call Lily and Claire 'ours'. We're completely amazed by their strength, fight, and will to live. We've learned that strength has nothing to do with size. This journey has taught us just how fragile life is, and what really matters. We are so glad to be at the end of this road.
Since I have not updated for a couple of weeks, I'll update what has happened with Lily and Claire lately. Lily's blood pressure was high for a few days in a row and they decided to order her a kidney ultrasound. Claire's blood pressure was border line high, so they decided to give her one too. The results showed that Lily's kidneys seem to be fine-- there was question whether one of her renal arteries was smaller than normal but the nephrologist decided it looked fine. Claire's ultrasound showed two small renal arteries, calcification, and overall her kidneys showed up bright. The nephrologist explained to me that the brightness indicated past trauma (and we all know how stressed her kidneys were shortly after birth). The calcification also is a sign of trauma. She reminded me how lucky Claire is and told me that she's going to be just fine. She'll have a follow up in 3 months and is at increased risk for hypertension in the future, but she decided to not do anything regarding their blood pressure since it's just borderline right now. We'll continue to watch it, just in case.
Lily and Claire both have had some issues eating. When feeding them, they would act like they were in pain and not want to take their full feeding by mouth. After a few weeks of this, they decided to order a swallow study. A swallow study takes films of the baby feeding and shows if any of the milk comes back up (reflux). They also thicken the feeding as they are taking pictures to determine what thickness works the best for the baby. It was determined that Claire has moderate reflux and Lily's is a bit less severe. As soon as they thickened their feeding the girls have done so much better. They no longer seem uncomfortable and eat larger amounts. Because this seems to finally be under control, home is right around the corner! We can't wait to finally have some normalcy again... or what will become our new normal at least (with twin babies in the house)! :)
We'd like to thank everyone for the kind words, thoughts, and prayers sent to the girls throughout this time. I cannot count the number of emails, cards, etc I have received from family, friends, and strangers who have been touched by their story. Prayer chains were started in several states and even in a couple different countries. It's pretty neat to think that two little girls, less than 4 pounds total at birth, have made such a difference already & touched so many lives. Joe and I are so blessed to be able to call Lily and Claire 'ours'. We're completely amazed by their strength, fight, and will to live. We've learned that strength has nothing to do with size. This journey has taught us just how fragile life is, and what really matters. We are so glad to be at the end of this road.
Tuesday, June 26, 2012
38 gestational weeks
Happy 38 gestational weeks to Lily and Claire!
It's hard to believe we're finally at the place where I would have delivered, had the girls not come so early. Lily is weighing in at 5 lbs 14 oz and Claire is 4 lbs 6 oz. It seems like everyday I notice them getting bigger now-- Lily is even wearing newborn clothes and graduated from preemie size a week ago. Claire, of course, is still wearing preemie and will for a while. Both girls have mastered pulling out their feeding tubes. Yesterday Lily actually pulled hers out, along with the tape that keeps it sticking to her face, and somehow got it out of her crib and to the floor next to her. The nurse and I laughed imagining this tiny baby pulling it out and throwing it all onto the floor. :)
We're still working on them feeding by mouth, which is what is keeping them at the hospital. I'm told that they will just one day "get it" and take off. We're so excited for that day to finally come, because we can't wait to bring them home! The NICU has been a long journey that we are excited to put behind us...
Monday, June 18, 2012
My apologies for not updating any sooner. Things are hectic in our house as we're doing last minute projects to have the house ready for the girls. They are doing great- Lily is weighing in at 5 lbs 5 oz and Claire is 3 lbs 14 oz. Their growth in the past couple of weeks has been amazing. Claire is now in a crib (like Lily has been) and both girls are off all oxygen. It's so nice seeing them without nasal cannulas.
They are still working on their feedings. As soon as they are able to take all feedings by mouth, then they get to come home. Depending on the day/how sleepy they are, usually determines how much they decide to take by mouth. The nurses say that this usually takes the longest and is the most frustrating. Probably because we're SO close to home, and waiting when something is within reach seems to take forever.
We had a professional photographer come in to take photos of the girls. So far we've seen the sneak peak pics, and they are adorable. Zane also was able to hold Lily and Claire for the first time-- it was pretty special, even though I think he was a bit scared of hurting them. Here are the photos:
Monday, June 4, 2012
Day 40...something!
Lily and Claire are both doing great. The past week has given us some positive and exciting changes. Lily is now in a crib, and has been since May 31st. Since she graduated from her giraffe bed (incubator), it means she is now in baby clothes and is able to maintain her own temperature. Her next obstacle is to learn to bottle andd breast feed and get off the little oxygen needed. Claire is also doing great. She is in clothes also, and is able to maintain her temperature on her own. If not for her low weight, she'd Also be in a crib. Both girls are getting fed every three hours for 30 minutes. Lily weighs 4 lbs 5 oz and Claire weights 2 lbs 13 oz. Its been so fun to see such positive progress and be so much closer to bringing them home. We are still weeks away, but its within reach now!
Wednesday, May 30, 2012
Update on Lily
I put off posting for a few days, because it isn't as fun to update with news that isn't just that things are going great. Things with the girls are still going very well, but Lily's follow up ultrasound wasn't exactly what we expected. The nurse practitioner tried to explain things to us (as you can see from my post before) but didn't go into the detail that the neonatologist gave us. What we found out, is that the report from one radiologist was worded strange, so Dr. Zac spoke with the pediatric radiologist. They ended up meeting and going over Lily's ultrasound together too.
Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.
So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.
Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.
Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.
So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.
Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.
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