Wednesday, September 30, 2009
Progress and Uncertainties
Today was pretty good for Rachel and Ashlyn, but Haley had a rough day. The MD'S did some cultures and two of them came back positive for infection. They think it is coming from the central line that was surgically placed two weeks or so ago. She seems to be doing a little better this evening. As for the possible obstruction, we are still waiting for a report from the doctor. The surgeon is looking into it as well. Her doctor does know for sure that she doesn't have NEC (necrotizing enterocolitis). What a relief! NEC is one thing for sure we don't wish for. One of our favorite nurses Kodi is taking care of Haley tonight. I always feel so comfortable leaving my children in her hands. She is a great nurse, she knows what she is doing, and we are grateful for her and all she has done for our beautiful little girls. Ashlyn continues to struggle with the edema. It seems like she has had an extremely hard time getting all the extra fluid off. Her urine output is good, but the extra fluid just seems to hang on. Good news - Rachel had 2 good poops today! We are proud of her. Rachel is doing good respiratory wise as well and seems to be getting closer and closer each day to getting off the ventilator and going on the c-pap. Her last chest x-ray looked good and she has been able to go down to as low as 35% on her oxygen. The doctors have not said anything about changing to the c-pap yet, but we are hopeful for it plus each day that passes the closer they are to getting off the ventilator. We are thankful for every little progression. There still will be the set backs, but our little girls are definitely fighters and will get through them. Pressing forward through the good and the not so good is our goal everyday.
Tuesday, September 29, 2009
Birthday with the girls
For my birthday today, we went out to dinner and then spent the rest of the evening with the girls. We do this everyday and so my birthday was nothing out of the ordinary. I had a good day though and really appreciate all who wished me a happy birthday. The NICU roller coaster ride continues. We had some really good days in a row the past week or so and I am so grateful for them. Today was a downward dip on the roller coaster. We found out today why Haley has not gone poop lately and why her abdomen has become distended. The doctor did a test on her today. She was given barium through her tube and then had a series of x rays to follow the barium through her GI tract. The 3rd x-ray taken showed the barium slowing down and backing up and showed a possible obstruction. We don't know for sure yet, but within the next day or two we should know for sure as they continue to take more x-rays to follow the barium all the way through the GI tract. We are hoping she is not obstructed and require surgery. Of course Haley will no longer get breast milk until things are moving in her gut again. Rachel had an x-ray of her bowels as well and the doctor was less concerned about her gut so she has not had the barium test. She still has not gone poop so still not sure why not. Ashlyn is still improving and still going pee well. She still has some extra fluid on her. We were hoping that a lot of that fluid would have come off by now with her peeing well, but it just seems that it's going to take more time. Ashlyn has not been getting breast milk for a while now so there is no concern with her gut at this point. The girls had their 2nd eye exam today and still no ROP (retinopathy of prematurity). They will be checked again in another week. We are so grateful for the good eye exams. So the roller coaster ride continues, but we are going to keep holding on strong.
My birthday cake that my parents got me over the weekend. The 3 pink butterflies represent the 3 girls. I love these cakes. I get one every birthday.
My birthday cake that my parents got me over the weekend. The 3 pink butterflies represent the 3 girls. I love these cakes. I get one every birthday.
Monday, September 28, 2009
Baby steps forward
Another good day! Hooray! Ashlyn is still going tinkle well. When we were visiting her today she was moving her fingers, toes, arms and legs more. She would grip my finger in her little hand. She's a strong girl.
Ashlyn holding onto my finger
We got to hold Rachel again this evening. Thomas actually didn't get to hold her when I last held her so this was his first time to hold her. Rachel is such a cutie!
Daddy holding Rachel for the first time
Haley is doing good as well. She likes to move around a lot. She is such a touch me not. She gets so red when she is bothered. She likes her peace and quiet.
Haley giving us a thumbs up
The latest challenge we are going through with them is that they are having some trouble going poop. Since they were so premature their little bowels are so slow. Both Rachel and Haley have been tolerating the breast milk, but we don't know where it's going as they have not gone poop lately. Hopefully their bowls will obtain a little more motility as they continue to grow and develop. The last thing we want is bowel problems. We will continue to take baby steps one day at a time. It seems like the whole NICU experience will never end, but it really has gone by pretty fast to this point. They have been in the NICU for 55 days with many more to come. We will continue to rely on God who can and does perform miracles. We will except whatever the Lords will is for our babies. We love them and will always love them.
Ashlyn holding onto my finger
We got to hold Rachel again this evening. Thomas actually didn't get to hold her when I last held her so this was his first time to hold her. Rachel is such a cutie!
Daddy holding Rachel for the first time
Haley is doing good as well. She likes to move around a lot. She is such a touch me not. She gets so red when she is bothered. She likes her peace and quiet.
Haley giving us a thumbs up
The latest challenge we are going through with them is that they are having some trouble going poop. Since they were so premature their little bowels are so slow. Both Rachel and Haley have been tolerating the breast milk, but we don't know where it's going as they have not gone poop lately. Hopefully their bowls will obtain a little more motility as they continue to grow and develop. The last thing we want is bowel problems. We will continue to take baby steps one day at a time. It seems like the whole NICU experience will never end, but it really has gone by pretty fast to this point. They have been in the NICU for 55 days with many more to come. We will continue to rely on God who can and does perform miracles. We will except whatever the Lords will is for our babies. We love them and will always love them.
Sunday, September 27, 2009
Love these kind of days
Today has been an awesome day for all three of our beautiful little girls. Ashlyn once again proves she is a fighter. Today she has urinated well. We were so happy to hear this great news as she had not been urinating much at all yesterday. She has urinated approximately 203cc's to this point. We hope and pray that she will continue to pee pee well. Thomas always playfully tells her every time he sees her that "if you pee pee, mommy and daddy will be able to take you home". I think Ashlyn has heard daddy and really wants to go home. Grandma Benedict (my mother) kept telling us this weekend that Ashlyn will have a great day on Sunday. She was right and I guess we should never doubt a Grandma's intuition. At today's visit, we were able to hold little Ashlyn for the second time. It's always such a spiritual and a bonding experience when we hold our girls. While I'm holding them, I'm in awe. I'm amazed as I watch them. As I look into their beautiful faces, I feel at peace and am full of love. What a special blessing they are!
Haley had a great day as well today. They were able to wean her O2 down to 40%, which is awesome. Rachel also had an a great day. Her last chest x-ray looked really good and they have increased the amount of breast milk she is getting. Rachel really likes to lay on her tummy. She looked so cute today laying on her tummy. She was wearing her cute pink hat.
Over all this Sabbath day has been great for our family. I know that there is a loving Father in Heaven who is hearing all our prayers. He will do what is right for our little family. He doesn't always seem to do everything I want, but he does do every thing I need, and what is best for us as a family. I know he sees the whole picture and I have only a glimpse. I firmly believe that God will not try us more than what is absolutely necessary for our growth and learning. We have been so blessed through out this whole experience even in our hardest moments. God is in the details of our lives.
Us holding Ashlyn
Mommy loves holding Ashlyn
Daddy adores his little Ashlyn
Rachel so cute on her tummy
Haley had a great day as well today. They were able to wean her O2 down to 40%, which is awesome. Rachel also had an a great day. Her last chest x-ray looked really good and they have increased the amount of breast milk she is getting. Rachel really likes to lay on her tummy. She looked so cute today laying on her tummy. She was wearing her cute pink hat.
Over all this Sabbath day has been great for our family. I know that there is a loving Father in Heaven who is hearing all our prayers. He will do what is right for our little family. He doesn't always seem to do everything I want, but he does do every thing I need, and what is best for us as a family. I know he sees the whole picture and I have only a glimpse. I firmly believe that God will not try us more than what is absolutely necessary for our growth and learning. We have been so blessed through out this whole experience even in our hardest moments. God is in the details of our lives.
Us holding Ashlyn
Mommy loves holding Ashlyn
Daddy adores his little Ashlyn
Rachel so cute on her tummy
Saturday, September 26, 2009
A strong will and a fighting spirit
Today has been a good day for Rachel and Haley. Those two girls are growing and looking cuter everyday. I changed Rachel's diaper this evening. I can actually say I like changing their diapers. I don't know if I will be saying this once they get home and have to do it all the time, but it gives me the opportunity as a mother to get to do something for them. Our Ashlyn just amazes me as she constantly fights no matter the illnesses and challenges she has been facing. Her fighting spirit just shows that she has a strong will to not give up. She has not gotten worse today, but she continues to have poor urine output. Her blood pressure seems to be getting a little higher which will help the perfusion to her kidneys and thus help her urinate better. The doctors are restricting how much fluid she gets to help keep her from getting more edematus. Ashlyn's primary nurse Kathleen talked to us tonight about a baby she took care of in the past who had illnesses and challenges similar to Ashlyn's. She told us that today the little boy is now healthy and growing. Kathleen is a wonderful nurse. She loves little Ashlyn and cares for her so well. We really like the nurses at Woman's hospital. They are all very caring and have been taking good care of our girls.
Kathleen taking care of Ashlyn
This weekend my parents (the girls grandparents) came to visit us and the girls. We had a good time together today. We went to Kemah Boardwalk and had dinner at Landry's in celebration of my upcoming birthday. My birthday is Tuesday September 29.
About a week ago we bought a freezer. We needed this freezer for all the breast milk I have been storing. I'm sure a lot of mom's out there have been in this similar situation. I'm glad I have been able to pump milk for my little girls. I know that my milk is the best for them. Thought I would share a picture of all the breast milk I have been storing.
Kathleen taking care of Ashlyn
This weekend my parents (the girls grandparents) came to visit us and the girls. We had a good time together today. We went to Kemah Boardwalk and had dinner at Landry's in celebration of my upcoming birthday. My birthday is Tuesday September 29.
About a week ago we bought a freezer. We needed this freezer for all the breast milk I have been storing. I'm sure a lot of mom's out there have been in this similar situation. I'm glad I have been able to pump milk for my little girls. I know that my milk is the best for them. Thought I would share a picture of all the breast milk I have been storing.
Set Back
Ashlyn has taken a set back. While we were visiting our girls yesterday, Ashlyn had a spell where she desat. Her vent and oxygen needs were increased significantly. She had to be restarted back on the blood pressure medication. Her urine output is minimal and she is also becoming edematus again. We don't know why little Ashlyn is getting worse again. We really thought things were looking better. All we can do is continue to pray.
Friday, September 25, 2009
In remeberance
September 24, 2009 marks the one year anniversary of the day we lost our twin boys - Brian and Brendan. We love and miss them so very much. Even though a year has gone by I still remember them and think of them often. They are special little perfect angels. We know they are happy and in the loving arms of our Heavenly Father. We are comforted to know that we will see them again and we will be able to raise them. We are an eternal family, a bond that lasts forever. Brian and Brendan we love you very much. We miss you. Love always, Mommy and Daddy.
Thursday, September 24, 2009
Our sweet little Ashlyn
Today we got to hold our third beautiful little girl - Ashlyn. It was an amazing feeling to get to hold her. We weren't sure this special day would come seeing how sick she had been the past couple of weeks. We are so blessed to have her and to now be able to hold her in our arms. We are just so grateful for our beautiful children. The lord loves them so much and he has given us this opportunity to be their parents and to raise them. What a special gift! I couldn't have asked for anything more. We look forward to holding them all again and continuing to watch them progress and grow. All three girls are being fed mommy's milk again. I'm so happy about that. It will help them grow strong. The girls have had a great week this week and we are happy about that. We hope for more good weeks like this.
Daddy holding Ashlyn
Mommy holding Ashlyn
Daddy, Mommy and little Ashlyn
Daddy holding Ashlyn
Mommy holding Ashlyn
Daddy, Mommy and little Ashlyn
Wednesday, September 23, 2009
Our night with Rachel
Today was yet another special day for us. I had the privilege of holding our precious little Rachel. Thomas was not able to hold her tonight, simply because we didn't want to put to much strain on her. It was so wonderful to hold her. As I sat there holding her, I enjoyed looking at her face and watching her make little faces. She is so beautiful! I felt the spirit so strong as I was able to hold her close. It has been such an amazing experience to hold little Haley and Rachel thus far. Hopefully tomorrow we will be able to hold little Ashlyn. We are continually amazed at how much they have all grown and progressed. All the girls are close to three pounds now. Ashlyn is still the smallest at around two pounds seven ounces, the other two are closer to three pounds. We are so grateful we have been blessed with these beautiful little girls. They are the light in our lives. The highlight of my day is going to the NICU to be with them. It's hard leaving them when we go home. My desire to bring them home gets stronger everyday. It's getting closer as each day comes and goes. I'm grateful for another good day with the girls. Many more happy days are ahead.
Mommy holding Rachel. Rachel is wearing her new fall hat.
Mommy, Daddy and Rachel
Mommy holding Rachel. Rachel is wearing her new fall hat.
Mommy, Daddy and Rachel
Tuesday, September 22, 2009
Birthday wish came true!
Today was another good day for the girls. Thomas also had a great birthday - the best ever! He and I were both able to hold Haley. Thomas's birthday wish came true. It was so awesome to hold her in our arms for the first time. The doctor told us we will be able to hold all of our little girls. Tomorrow we will hold Rachel and then the next day we will hold Ashlyn. Ashlyn is recovering very well from her illness. She is such a trooper. Even the doctor told us she is a little miracle baby. She being our littlest at 12.3 oz at birth, she sure has proved that she is a fighter and is determined to come home with us some day. We also got a great report today after the girls had their first eye exam. So far none of them have evidence of ROP (retinopathy of prematurity). This is such a relief! They will be checked again in a week as their eyes are still maturing. Once again we know that the miracles we speak of come from an all knowing and all powerful God. Who loves us and who wants only the best for the girls, Thomas and I. We love these beautiful little princesses so very much.
First family photo with Haley
Daddy holding and admiring Haley
Mommy happy to hold Haley
First family photo with Haley
Daddy holding and admiring Haley
Mommy happy to hold Haley
Monday, September 21, 2009
Another great day together
Happy to report that the girls had another great day together! Ashlyn is looking better as the edema is resolving. Both Rachel and Haley are getting fed again with my breast milk. It's amazing to look at them and see how much they have grown. I think back to when they were born and how tiny they were. They have come a long way in just 7 short weeks. They have overcome a lot and are continuing to be so strong. Thomas and I are so proud of our daughters and their strong fighting spirits. Thomas's birthday is tomorrow and my birthday wish for him is to get to hold one of our daughters. Thomas has said that this is his greatest desire. He doesn't want anything else for his birthday except for the opportunity to hold his daughter. Will this wish come true? We will find out tomorrow...
Sunday, September 20, 2009
Fighting on
Today all three of our beautiful little girls seem to be having a great day together. Little Ashlyn seems to be doing so much better than where she was three days ago. We thought we would lose her on several different occasions this past week. Now she is doing so much better. We are in amazement with little Ashlyn, but then again not really because we know who is in charge, He has and continues to perform miracles for our precious little ones. Rachel seems to be holding her own pretty well. We were concerned about her this past week as well. We didn't know for sure what would happen to her, but she seems to be getting stronger each day. Her blood pressure has improved dramatically compared to were it was 5 or days ago. She is completely off all her blood pressure medications and seems to be holding her own. Haley continues to fight on, she is doing great. She is definitely a Stansel through and through. Although she hates to be touched, she is so lovable. She turns bright red and her heart rate shoots up when she is bothered or touched. She is a feisty little thing. We are so eternally grateful for each of our little girls, they are all so beautiful and just make us so happy and proud. It is awesome to be with them, because of the spirit we feel when we are with them. They have a way of making your day better if it has been a rough day, or making a good day even better.
Saturday, September 19, 2009
Amazement
Today the girls had a great day! Ashlyn seems to be getting better. She is not as edematus as she has been. Her oxygen needs have come down from 100% to 35% as of this evening. Her blood pressures are stable and her urine output is much better. Rachel's blood pressure has come up and the blood pressure medication has been decreased and her urine output is good. Haley is still doing well despite having an infection. Overall the past two days have been good for the girls, but today has been the best for all three of them together. It seems like in the past couple of weeks there hasn't been one day where all three have been well all together. We will continue to trust in the Lord that Ashlyn will completely over come this yeast pneumonia she has had. It really helps Thomas and I to feel better when our girls are doing better. We really worry about them when they get really sick as we love them so very much. These precious daughters of God are the world to us. They are a gift from God. Our other three precious little angles will never be forgotten. We are a family and families are forever. I am so grateful to know that we will always be a family. I love my family!
Today we took a cute picture of Rachel. Her nurse suggested that we put our wedding rings on her foot to get a perspective of how small she is.
Today we took a cute picture of Rachel. Her nurse suggested that we put our wedding rings on her foot to get a perspective of how small she is.
Friday, September 18, 2009
Little Miracles!
Today we had a great visit with the girls. Our little Ashlyn continues to fight for her life. It is amazing how strong she is despite everything she has and continues to go through. She is swollen due to all the fluids that she is getting. Some days she has good urine output and other days she does not, though it seems to be getting a little better each day. Thomas and I were able to "hold" her today. It was a modified hold where we put our hands into the isolete and lifted her up off her bed. We were able to gently rock her. She tolerated it well. It was nice to be able to touch and hold her like that. We got to change her diaper too. Rachel is getting better though she still has some fluid on her as well. She is not as edematus as Ahlyn. Haley is doing good. Yesterday she had to have a PICC line placed surgically. She handled it well. Today I got to change her diaper. She was being a wingle worm while I was trying to change her. It was so awesome! Thomas and I got teary eyed as we enjoyed the moment with her. Our little girls are so beautiful and we are so thankful for them. God continues to watch over our little family, we truly feel His love and His kindness in these difficult times of our lives. It never ceases to amaze me, that there is a loving Father In Heaven who does hear our every prayer, who does helps us through the most challenging times of life.
Wednesday, September 16, 2009
Endure to the End
Just returned home from visiting our beautiful Ashlyn, Rachel, & Haley. Ashlyn continues to struggle with her urine output. She has urinated some today but not what the MD's would like. Her vitals have looked pretty good today. This evening her O2 sats have dropped into the eighty's, when there is that much fluid around the lungs it becomes difficult to vent properly, but they are doing all they can do to help her. Rachel seemed to have another rough day as well, and they can't figure out what is causing it. Her blood pressure has been quite low, her need for O2 remains high, and her urine output has slowed down compared to yesterday. As we were leaving this evening her blood pressure had come up again and she seemed to be urinating more. Little Haley seems to be holding her own, even though she has caught another infection. She continues to tolerate the breast milk feeds, pee, and maintain her blood pressure without the dopamine medication. So yes the roller coaster ride continues on, but we will ride it to the end. I know God is in control of everything that goes on. While we are deeply saddened by the loss of our two boys and one girl, we are comforted in knowing that we provided a body for these sweet children. I know that the main purpose of coming to earth is to obtain a physical body, and I thank God everyday that we did not do selective reduction because of that fact alone. My children have a body, they are perfect and they will be exalted and live with God forever. I know God has blessed us with all six of our children. Some have spent a shorter time with us on earth than I would of liked, but that is OK because I know Thomas and I will have the opportunity one day to raise those that have gone on before us just as if they were being raised here with us on this earth. We will see our little Kaitlyn, Dallin, and Braden again one day. God has promised that to us if we live righteously and do what he has asked of us here on this earth. We must endure to the end despite all the challenges and trials we have faced and will continue to face.
Challenges continue
Here is a quick update today as we had a late night last night and was not able to update our blog. Yesterday the girls turned 6 weeks old. How time has flown by. They have all had their challenges and struggles since birth and they continue to struggle in various degrees. Ashlyn is the one we are the most worried about at this point. She is just not urinating enough to get the extra fluid off. She has roughly 3 pounds of fluid on her. All the extra fluid is putting a strain on her lungs. We worry about her a lot and are not sure what to expect in the coming days. Her doctors are trying everything they know. Rachel is sick as well, but seemed to be getting better as of late last night. This morning though her blood pressure was going low again. Even our superstar Haley has a new infection now. We were not able to hold her yesterday because of this new infection they found. She was put on antibiotics again. She is still getting the breast milk feeds and is tolerating them well. This journey has been tough and we hope and pray that these girls will get better and be able to fight these infections. Being so premature, they just don't have the immune system to fight infections right now. So all we can do is pray and leave it in the Lord's hands. Only time will tell.
Monday, September 14, 2009
All Will Be Well
Well it looks like Rachel is following her sister's (Ashlyn) footsteps. Rachel has some kind of infection as well and has been having a hard time all day with her blood pressure. It has been low and her oxygen concentration has increased. The doctor has been giving her medications and fluids to help increase the blood pressure. We hope it will work. We really wish the girls could all have a good day together as they make us worry constantly. Ashlyn is doing better, but is still very bloated. She continues to urinate, but not as much as the night before. We again hope that she will pee more. Haley is still doing good. Her vent settings are being weaned and she is still on 30% or so of oxygen. The doctor teased us today and said that maybe we will be able to hold her tomorrow. How wonderful that would be!!! We will just have to see how tomorrow goes for her. Things always seem to change so quick with them. We will continue to leave it in the Lord's hands, he is in charge, he created each of us and He will do what is best for the girls and for us. God has always been there for us, and He will continue to help us through these most difficult times.
Sunday, September 13, 2009
Urine trouble
The NICU roller coaster ride continues. It's been an especially wild ride the past week. Parents who have been through it know how it is and how stressful it can be. It has been tough as we love our precious little girls so very much. Ashlyn has been our sickest little child the past week. She has been so bloated due to all the medications and all the fluids she was getting. Also her urine output has not been great. We visited our little girls earlier today and Ashlyn was still not having a good urine output, but later tonight when I called to check on her, her RN told us she had urinated 114cc. Thomas and I couldn't believe it, especially after the MD's told us today that she seems to be going into Renal failure because she hadn't been urinating well. I have never been so excited about pee before! We both started to cry in excitement. We hope she will continue to urinate well and will make it through this illness. Our little Rachel seems to be coming down with something, they are doing cultures to see if she has developed a yeast infection just like Ashlyn and Haley have been through. They stopped her feeds, but the TPN continues. Her ventilator settings have gone up and her need for oxygen has risen as well. Her blood pressure is a little low today, so something is going on. Hopefully the MD's will figure it out soon. Haley seems to be doing awesome the past few days. Haley is down to 30% on her O2 requirements. 21% is room air. We are hopeful she will be able to get off the ventilator soon and be put on a c-pap. These precious little girls are so strong despite what they have been through. We continue to be grateful for their lives and the opportunity to be their parents. We are so grateful to have our little babies as being a parent is so wonderful. We only want what is best for them and do our best everyday to be there for them.
Saturday, September 12, 2009
The ride continues
It seems like everyday has been different with our precious daughters. Today seemed to go very well for Haley. The doctor said she was the shining star of the three of them today, then this evening as we were visiting she started to do a little bit worse. Not that she is doing horrible, just not as good as she was during the day. Rachel was doing OK today, but like Haley she seems not as great this evening. We still worry about little Ashlyn, she is so bloated due to edema from all the medications (antibiotics) and her pneumonia/infection. Her kidney's are taking a beating with all the strong antibiotics she is getting. She has not been urinating as much as the doctors would like. When we were there this evening she did have a good wet diaper. We just talked to the nurse over the phone and Ashlyn had another wet diaper. We are hoping she will continue to urinate more which will help get the extra fluid out. I feel confident that Haley, Rachel and Ashlyn will continue to move forward, they will over come the obstacles that are in their path and will become stronger and stronger. We love and cherish these beautiful little angels, for they are truly our Angels. Thomas and I can't help but to feel the Spirit strongly each time we are in their presence. It's the highlight of our day when we are with them. We will do anything for our beautiful little girls. We feel so blessed to have them in our life. I know that there is a God who cares about our little family, He has and continues to watch over us. We owe everything to Him, for all that He does for us. We will pull through these difficult times and become stronger people because of all that has happened to us.
Thursday, September 10, 2009
News Frenzy
Yesterday was a busy day for us. I went back to work after being gone for almost 3 months, we had our second interview with the New York times and we also spoke with channel 39 KIAH News. The interview was aired on the 9pm news this evening. The most important news of course is our little girls. Ashlyn is still fighting and seems to be making it through this pneumonia. She is so resilient and seizes to amaze us. We continue to hope and pray she will continue to fight and recover fully from this illness. Ashlyn's last head ultrasound showed no change to the size of her ventricles which is great news. We hope that in time she will be able to reabsorb the extra spinal fluid and not need any more spinal taps. They have not been able to do another spinal tap due to her current illness and due to the fact she is edematous. The other girls are doing fine. Haley is now getting fed more expressed breast milk and is tolerating it. Haley's latest head ultrasound showed the brain hemorrhage is resolving and getting better. Haley had a good day today. Rachel's last head ultrasound showed that her small grade 1 hemorrhage is completely gone. All the girls are growing and getting bigger. They have doubled their birth weight. Haley and Rachel are 2 pounds. Ashlyn is 1 1/2 pounds. We have not been able to hold them yet, but in time that happy moment will come. How joyous that day will be! We do get to touch their little hands and feet. They are such adorable little girls and we are so blessed to be their parents. How special they are to be here with us.
Tuesday, September 8, 2009
Trying times
Another day down with the girls. Thomas received a call late this morning from Dr. Finkowski-Rivera who is taking care of the girls this week. She said that little Ashlyn has had a blood culture come back positive for Yeast Pneumonia, which is extremely dangerous and can be fatal. She said they have had an infectious disease doctor from Texas Children's Hospital over to see her, and that they have put her on yet another antibiotic and an anti fungi drug. Also the doctors called Thomas again around 3pm stating they needed to put an emergency PICC line in. Dr. Bloss was able to put it in successfully. When we left the hospital this evening, Ashlyn seemed to be doing a little better. The problem with the drug they are giving her for this specific type of pneumonia is that the medication is pretty hard on the kidneys and her kidney numbers are already elevated. The doctors didn't really have a choice but to give her the medication. They will be monitoring her very closely. They said time will tell what happens to the kidneys. Rachel and Haley have both had a relatively good day. They have increased the breast milk feeds for both of them and they are tolerating it well. Our biggest concern/worry is Ashlyn and all that the poor thing has gone through. Like we have said in the past, it's in the Lord's hands and all we can do is pray for her and hope for the best. We are trying hard to stay strong through all this, but it's been really hard as we have been going through these ups and downs for 5 weeks now. I feel strongly that when one door closes another one opens. That is how a loving Heavenly Father works. He is so loving and will do what is best for the girls and for Thomas and I. I know He will continue to help us through, there is no way we could make it without a kind and loving father in heaven.
Arrived Home with a bump in the road
We made it home safely tonight from the Big Easy. We had a good time visiting Thomas's parents and seeing some of the sights of New Orleans. We left New Orleans around 2 pm, and arrived to our home around 7 pm. Soon after we got home, we rushed to the hospital to see our little girls. It was so wonderful to see them. We really did miss them. We stayed a couple of hours this evening until we were booted out due to the routine shift change. Rachel and Haley are doing relatively well, haven't had too many changes over the past twenty four hours. They are both tolerating the breast milk feeds. They are getting 1.4 ml/hr continuously. Ashlyn is the one we are worried about. Since that episode yesterday, she had to be on 100% oxygen for most of the day today and her O2 saturation's were still 85 to 90. We like to see her in the mid 90's (92-96). She seemed to be doing a little better when we were there this evening. Her sats were getting more steady in the 90's. They are going to try to wean her O2 down very slowly. Ashlyn is also back on dopamine (medication to help increase her blood pressure). We are hopeful all will be well with her. This is just a bump in the road and we are praying she will get through this.
Sunday, September 6, 2009
Good Sabbath Day
Today was the Sabbath Day and like usual we went to church, except this time in a different city. We attended the Jefferson Ward in the New Orleans Stake. It is a very interesting building that my in-laws attend, it used to be a RLDS building. They are using that because the Stake Center is being renovated. It seemed like a very nice Ward. Thomas and I decided to take a tour of the city this afternoon. We went through the French Quarters and along Bourbon street. There was a festival and a parade going on so it was crowded. All I can say is that Bourbon street and the French Quarters is a very different place than what I am accustomed to. We also drove around downtown New Orleans and enjoyed seeing the history of the city, it was kind of a neat thing to see. This evening we attended a Young Single Adult Fireside. My Father In-law spoke. He did a great job. It has been nice visiting my in-laws and seeing the sights of New Orleans.
Update on the girls...
We had a bit of a scare this evening, Thomas called to check on the girls, and they told him Ashlyn was having an extremely difficult time keeping her O2 Saturation's up. She was dipping into the forties. The MD had to start bagging her, that still didn't work either, finally after probably a couple of minutes she started coming back up. The tube had gotten moved and was therefore not in the right spot. They corrected that issue and she is doing much better. Haley, and Rachel had a great day, and so did Ashlyn other than that brief episode she went through this evening. They increased the amount of breast milk Rachel is getting through her feeding tube. She is tolerating it so far. They also started feedings on Haley after a long time off of them. All in all my beautiful little girls are doing great. We are so thrilled to go home tomorrow and see them. We have missed them. We are so thankful that they are doing well and are continuing to make baby steps forward. We are also so grateful for all the prayers being said for their health and comfort. This sabbath day I reflected on our loving heavenly father and the miracles he has done for us. I am grateful for him and know that all the prayers being said are being heard and answered. He knows and loves us all. This I know for sure.
Update on the girls...
We had a bit of a scare this evening, Thomas called to check on the girls, and they told him Ashlyn was having an extremely difficult time keeping her O2 Saturation's up. She was dipping into the forties. The MD had to start bagging her, that still didn't work either, finally after probably a couple of minutes she started coming back up. The tube had gotten moved and was therefore not in the right spot. They corrected that issue and she is doing much better. Haley, and Rachel had a great day, and so did Ashlyn other than that brief episode she went through this evening. They increased the amount of breast milk Rachel is getting through her feeding tube. She is tolerating it so far. They also started feedings on Haley after a long time off of them. All in all my beautiful little girls are doing great. We are so thrilled to go home tomorrow and see them. We have missed them. We are so thankful that they are doing well and are continuing to make baby steps forward. We are also so grateful for all the prayers being said for their health and comfort. This sabbath day I reflected on our loving heavenly father and the miracles he has done for us. I am grateful for him and know that all the prayers being said are being heard and answered. He knows and loves us all. This I know for sure.
Saturday, September 5, 2009
New Orleans
Today we did some sight seeing around New Orleans. We drove to the French Quater and down Bourbon street. It was raining and we couldn't find a parking spot so we didn't get out of the car and walk around. The French Quater was definitely different, but interesting. This is my first time in New Orleans. We also drove and saw some plantation homes outside of New Orleans. They were neat to see. One of the homes had a long path leading to the house that was lined with beautiful trees. I had never seen anything like it. Near the plantation homes, we walked up the levee and saw the Mississippi river. We also did some shopping. We bought the girls some cute outfits. I look forward to dressing the girls up in these clothes and all the other clothes we have for them. We have been keeping in touch with the girls nurses today. They continue to do well. Of course we miss them and while it has been difficult to leave Rachel, Haley and Ashlyn behind in Houston, it has been nice to see my in-laws who are dedicating a year and a half to serve the Lord here in the New Orleans area. They haven't had the chance to see our children yet, because of their mission so we showed pictures and video footage of the girls, they really enjoyed that very much. So we have had a great time here in New Orleans and are glad to have had this opportunity to visit.
Friday, September 4, 2009
Happy One month!
We arrived in New Orleans safely this evening. We are looking forward to relaxing and enjoying ourselves for a couple of days. We look forward to seeing all that New Orleans has to offer. We have been calling the NICU to check up on the girls probably every four to six hours, They are doing well. They are one month old today! How fast the month has gone by. Today they have all been weaned down on their oxygen percentages. This is great news as this means their lungs are healing and growing stronger. Ashlyn had to go back on the dopamine medicine to help her blood pressure. When dopamine is being given they stop the feeds because the blood flow is decreased to the gut. It is important to have a good blood flow to the gut when being fed. The doctors stop the feeds to help prevent problems like NEC (Necrotizing enterocolitis). Haley on the other hand is being weaned off the dopamine and will get to start feeds when she is off of it. She is still on the oscillator, because it seems likes she likes it so much better than the traditional vent, plus her ABG's (Arterial Blood Gas's) look much better on it. Rachel is doing really well today, we are so excited about that. They have been able to wean her O2 to the best settings yet for her. Over all they all seem like they are getting some what stronger as the days go by. We love these little precious girls. They have truly touched and blessed our lives already. We look forward to spending many days ahead with them. Ashlyn, Rachel, and Haley are so amazingly strong. We are so grateful to a loving Heavenly Father who has permitted them to remain with us thus far. We feel so blessed to have them in our family.
Thursday, September 3, 2009
Good Day
Tonight was a great night with our girls and at the same time a hard night. They all seemed to have had a good day. Dr. de Guzman was able to remove 4 cc's of spinal fluid from Ashlyn today. We are so happy about this as this will keep pressure from building in her brain. We hope the doctors can continue to remove the extra spinal fluid by doing these spinal taps. Rachel and Ashlyn were restarted on continuous feeds with my breast milk. So far they are tolerating it well. Haley is improving as well. She had a head ultrasound today and it showed no change so that means her head has not gotten worse. So they all seem to be hanging strong today. We are so grateful for these good days. We know more are to come. The hard part of the night was leaving the girls because we have decided to go to New Orleans for the Labor day weekend to visit Thomas's parents who are currently there serving a mission for our church. It is extremely difficult to go because we don't like to leave our precious little girls behind. It will be the first time we will have not been able to see them for three days straight. Thomas took it hard. Of course mama did too! Thomas had tears in his eyes when we left the NICU tonight. We will miss them. We debated about going, but we felt a little vacation would be good for us. We also figured that we won't be able to take a vacation again in a really long time. So tomorrow afternoon we will be heading out to New Orleans. We hope to have a relaxing time and a good visit with Thomas's parents.
Here are pictures of the girls name tags for their beds. One of the nurses makes these for all of the babies in the NICU. She also made one for each of our other little ones who have passed.
Here is a picture of Haley's nurse (Kodi). Kodi is one of our favorite nurses. She is so great with Haley.
Here are pictures of the girls name tags for their beds. One of the nurses makes these for all of the babies in the NICU. She also made one for each of our other little ones who have passed.
Here is a picture of Haley's nurse (Kodi). Kodi is one of our favorite nurses. She is so great with Haley.
Wednesday, September 2, 2009
Day by day
Tonight we went to a NICU parent support group meeting. The topic of discussion was infant safety seats and how to install them correctly in your car. Since we have car seats for the babies already we wanted to go to this meeting to learn how to correctly install them in the car. I know this isn't something we needed to know right away since our girls will be in the NICU for quite some time, but we were interested in learning for when the time does come when they will come home. I learned quite a bit on how to properly install an infant car seat. I look forward to when we will be installing 3 car seats in the car and bringing them home. Well we still don't know when that will be. None of their doctor's have given us an idea of when they will be able to come home. We are hoping to bring at least one of them home before Christmas, but that is just our desire. It would be a wonderful Christmas gift.
Baby update...
Rachel is doing well after the surgery she had this afternoon to put in the PICC line. They were able to successfully place it without any problems. She was sleeping when we saw her due to all the sedatives from the surgery. Ashlyn was just hanging out as usual. Nothing really new going on with her. Ashlyn will be getting another spinal tap soon. Haley continues on the oscillator vent, but her oxygen needs on the vent have come down. Still don't know for sure if she has pneumonia. She doesn't seem sick at all. None of the girls are getting breast milk feeds right now. Rachel will be restarted on them tomorrow. Not sure when they will restart Haley and Ashlyn on the feeds. They are waiting for their belly's to not be distended. The doctor's are keeping a close watch out for NEC. They have gotten X-rays of their belly's and all looks good and they don't suspect NEC. So all in all they girls are doing good.
Here are pictures of the babies covered up in their isolates:
ASHLYN
HALEY
RACHEL
Baby update...
Rachel is doing well after the surgery she had this afternoon to put in the PICC line. They were able to successfully place it without any problems. She was sleeping when we saw her due to all the sedatives from the surgery. Ashlyn was just hanging out as usual. Nothing really new going on with her. Ashlyn will be getting another spinal tap soon. Haley continues on the oscillator vent, but her oxygen needs on the vent have come down. Still don't know for sure if she has pneumonia. She doesn't seem sick at all. None of the girls are getting breast milk feeds right now. Rachel will be restarted on them tomorrow. Not sure when they will restart Haley and Ashlyn on the feeds. They are waiting for their belly's to not be distended. The doctor's are keeping a close watch out for NEC. They have gotten X-rays of their belly's and all looks good and they don't suspect NEC. So all in all they girls are doing good.
Here are pictures of the babies covered up in their isolates:
ASHLYN
HALEY
RACHEL
Response to comments
Just wanted to give a response to the comments that we have gotten. First of all I want to thank everyone for the uplifting and encouraging comments. We appreciate all of them so much! We always enjoy reading them. It's so comforting to know so many people love us and pray for us. We know all prayers are being heard as we have gained strength through all of this. Even though we have not met most of you, we feel we know you by the love you share for us. Second I wanted to let everyone know that I have updated some of the past posts. I updated the August 5 post with the weights and lengths of all the babies. Also explained what happened the day I delivered the babies. Look through some of our other older posts in August and you will see pictures that I have added. We have not added pictures of the babies just yet due to the media. We appreciate every one's patience. In time we will post pictures of them. We want everyone to know we love you and are so grateful for every one's sincere thoughts and prayers. Keep those comments coming!
Love, Amanda and Thomas
Love, Amanda and Thomas
Tuesday, September 1, 2009
4 weeks old!
Happy 4 weeks! The girls are 4 weeks old today! We are so grateful for their precious little lives. We can't believe how fast 4 weeks has gone by. We are also so grateful for the little baby steps forward they have made. Yesterday we got good news that the doctor was able to get 3 1/2 ml of spinal fluid out of Ashlyn. They did a follow up head ultrasound this morning and it showed no change with her ventricles. We were hoping that they had decreased in size, but are glad they have not gotten bigger. This means the spinal taps they are doing are working. We are hoping that they will continue to work and she won't have to have more invasive procedures on her brain to get the fluid out. Rachel has been restarted on the breast milk feeds. They are going to feed her a small amount continuously versus giving her 1 ml boluses every 3 hours. Also with Rachel, they tried to put in a new PICC line, but they were unsuccessful so she will have it surgically put in tomorrow. She needs this PICC line for the TPN. Haley is still on the oscillator vent. The doctor suspects she has pneumonia. She was already on one antibiotic. They started her on another. We are faithful she will be make it through this challenge. We are so amazed everyday how strong and resilient they are. Even with all the challenges they are facing, they continue to fight. Before we know it we will be celebrating their one year birthday. What a glorious day that will be.
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