The girls continue to thrive. They both had a good day today. When we visited them today they were both sleeping soundly. Rachel and Haley continue to tolerate the CPAP. They don't seem to mind it anymore. We found out today that Haley weighs 5 lbs and Rachel weighs 4 lbs 11oz. They sure are growing fast!
Haley looking cute in her outfit.
Rachel wearing her turkey hat. Here she is sleeping with her mouth open. So cute!
We were surprised when we arrived home today and found a package on our doorstep. Inside the box were 2 beautiful handmade blankets. The blankets were from a very kind person here in the Houston area. It is always so nice to see there are so many great people out there who are so kind and thoughtful. This to me exemplifies the true love of Christ, showing such kindness to someone you don't even know. A big thank you for the time put into making these beautiful blankets. A big thanks to everyone for your thoughts and prayers on our and our children's behalf.
Friday, October 30, 2009
Wednesday, October 28, 2009
Bye Bye Ventilator!
It has been an awesome day today because both girls yes both girls are finally off their ventilators. The doctor took both Haley and Rachel off the ventilator around 11:00 this morning and put them on a CPAP (continuous positive airway pressure). This is a huge step forward for our little girls. The ventilator has served its purpose for the past twelve weeks and we are not sad to say goodbye to it. We hope they can continue to tolerate the CPAP, and not have to go back on the ventilator. They both have been extremely agitated by the CPAP. All they have known since birth was the ventilator and so they are going to have to get used to it. We hope they will adjust to the C-Pap and continue to progress. Words can't express how thrilled Thomas and I are with this great step forward today. Every little and big step forward is such a wonderful blessing. We truly have been blessed. How grateful we are!
Haley sucking on her pacifier
Haley with the CPAP. She's not too happy about it.
Rachel with the CPAP
Rachel
Rachel (video)
Haley (video)
Haley sucking on her pacifier
Haley with the CPAP. She's not too happy about it.
Rachel with the CPAP
Rachel
Rachel (video)
Haley (video)
Tuesday, October 27, 2009
Eyes...
Haley had her eye surgery today by Dr. Coats. He's a fantastic doctor and does a great job with laser surgery. Haley's surgery went "smooth" according to Dr. Coats. He will check back in a week to see exactly how well it went. We are hoping for the very best for her eyes. Rachel had her first eye exam since her eye surgery last week, and Dr. Coats said it looked really good. He said usually if the eyes start to do better after the surgery it will continue to improve. He said almost always, but there are a few instances that proved untrue. So we were encouraged by that news. Dr. Coats will exam both girls eyes in a week to see how they are doing. He will do weekly eye exams at first to make sure they are OK. Then He will decided how often to check them if they are doing well. So the big news of the day is Haley's surgery and Rachel's eye exam and both seemed to go very well according to the doctor. We are grateful for the many prayers by so many people. We really appreciate them and we do know that they are heard and answered.
Monday, October 26, 2009
Miracles
It's always the highlight of our day to go to the NICU and see our beautiful girls. They were looking so cute in their little outfits today. Unfortunately we were not able to take any pictures because we accidentally left the camera at home. The girls are doing well. Rachel's vent settings were decreased more today. She will be tried on the CPAP again later this week. We hope she will be able to do it this time. She really doesn't like the breathing tube anymore and its getting harder and harder to keep her from pulling at it. Haley is having her eye surgery tomorrow morning. I held Haley tonight. She just snoozed away in my arms. I love to just hold and gently rock my little girls. They are my everything. I am so grateful for them and am so blessed that we were chosen to be their parents. Our little girls are such miracles. I can say that I have witnessed miracles in my life - Haley, Rachel and our angels Dallin, Kaitlyn, Braden and Ashlyn. These miracles will be forever treasured and remembered.
Tonight we had good friends come over to visit with us. They are great people. We truly love and admire them. They have a beautiful little two year old girl. Thomas had a great time playing with her and making her laugh. I can see that Thomas will be a wonderful father to his daughters. He loves and cherishes them so much. He gives them many kisses when he holds them. Thomas mentioned to me that it was so awesome to play with her, not only because he has a great love for her and all kids, but it brought him comfort and hope knowing he will be able to do the very same with Rachel and Haley when they come home. We look forward to that day when we are able to bring Rachel and Haley home and to have their precious lives in our home. It just doesn't feel complete in our home right now, simply because our girls aren't here with us. We know that they will bless our home beyond measure.
Tonight we had good friends come over to visit with us. They are great people. We truly love and admire them. They have a beautiful little two year old girl. Thomas had a great time playing with her and making her laugh. I can see that Thomas will be a wonderful father to his daughters. He loves and cherishes them so much. He gives them many kisses when he holds them. Thomas mentioned to me that it was so awesome to play with her, not only because he has a great love for her and all kids, but it brought him comfort and hope knowing he will be able to do the very same with Rachel and Haley when they come home. We look forward to that day when we are able to bring Rachel and Haley home and to have their precious lives in our home. It just doesn't feel complete in our home right now, simply because our girls aren't here with us. We know that they will bless our home beyond measure.
Sunday, October 25, 2009
Baths and new clothes
The girls had a relatively good day, despite Rachel having an episode of Acid Reflux that caused her to drop her heart rate. Dr. Thompson put her on anti-reflux medications. The meds seem to have helped. Acid reflux is very common in preemies and we were told that Haley will have it too. Haley's feeds are being increased and so the acid reflux will show up as her feeds are increased even more. We had a fun time sponge bathing Rachel for the first time today. It was so awesome to bathe her and feel like we are a part of her care in some small way though we both were nervous as we didn't want to hurt her in any way. Doing basic baby care is so new to us. We are learning! Rachel is such a wiggly worm which made bathing her a little difficult, but together we did it. We will become pros real soon. We bought some preemie clothes for the girls this past weekend and tonight we were able to put a little outfit on Rachel after her bath. She looked so cute! The outfit was still a little big for her, but she will grow into them. Haley will get her bath later and her nurse will put a little preemie outfit on her after her bath. Haley had another eye exam this evening and she will need the same laser eye surgery her sister Rachel had last week. It will be done either Monday or Tuesday. We again hope it will go well and Haley will be ok.
Mommy dressing Rachel
Rachel looking cute in her new clothes
Haley at her post
Haley getting assessed by her nurse
Mommy dressing Rachel
Rachel looking cute in her new clothes
Haley at her post
Haley getting assessed by her nurse
Our Precious Girls
Today we arrived home from Austin. It was hard to leave the girls for a few days, but they did very well while mommy and daddy were gone. We arrived home and quickly went to the hospital to see our little girls. Thomas and I both got to hold them tonight. Thomas held Haley and I held Rachel. Thomas would not stop kissing the girls on their foreheads. He was so happy to see them. We both missed them so much. Rachel is a little spitfire, she continues to be extremely active. When she lays on her tummy, she wiggles around a lot and sometimes it looks like she is trying to crawl out of her bed. She is strong and is able to move her head around really well. She can also lift her head. The nurses let us do more when we visit so Thomas and I worked as a team and put eye drops in Rachel's eyes. It took both of us to get them in. Rachel gets eye drops four times a day since her eye surgery last Wednesday. She seems to be recovering well from the laser surgery, but we still won't know until at least Tuesday if she will be able to see or not. We know she will be ok, and that the good Lord will continue to take good care of her as He has thus far. Our little Haley is gaining weight well. She is becoming a chunk. She definitely has her daddy's genes. The doctors have been able to increase her feeds again today to around 6cc's of breast milk an hour. She will have another eye exam Sunday from Dr. Coats. She will most likely have to have the same surgery her sister Rachel did. We will hope and pray for the best for her eyes as well. The girls are now on manual control in there isolettes. This means their bed is no longer regulating their temperatures. Rachel and Haley are now wearing T-shirts and are regulating their own temperatures. This is another step forward for them.
Haley in her bed/isolette
Mommy holding Rachel
Haley in her bed/isolette
Mommy holding Rachel
Saturday, October 24, 2009
Ashlyn Laid to Rest
Today was both a sad and happy day. This afternoon at 1:00PM we laid to rest our precious little Ashlyn Louise Stansel. She was buried next to her three siblings in Pflugerville Texas, about twenty minutes north of Austin. It was very hard to say good bye and we will miss her very much. We know where she is, we know who she is with, and that alone brings extreme comfort to Thomas and I. Ashlyn does not have to endure this world. She is a perfect little girl. All she needed was to gain a physical body and return home to that God who gave her life. She has touched our lives for good. She is such a beautiful little girl. We love her and cherish her life more than words can express. We are deeply sadden by the separation from her, but we know that we will see her and her siblings again someday. It is occasions like this that my feelings turn to our Saviour Jesus Christ. Without our Saviour we would never be able to be reunited as a family one day. Families are Forever! We owe everything to him because of the love he had and continues to have for us. Thomas and I will strive each day to be a little better, to be all that we can be, so that we will be worthy to be with our six beautiful children again one day.
Wednesday, October 21, 2009
Good things
Today was a good day despite Rachel having to get eye surgery in both eyes. Her surgery went well, but we won't know until a week or two if the laser surgery worked and stopped the progression of the ROP. We really do hope that Rachel will have vision in both eyes and that this surgery worked. Haley may have to have the eye surgery as well in the near future. Dr. Coats will check her eyes again tomorrow. We were so happy to get to hold Haley today. The last time we held her was 2 weeks ago before her surgery. We were also so happy that she finally has pooped quite a bit. Haley is getting breast milk and her feeds were increased today. Yeah! The TPN she is getting was also decreased. I was so glad to hear that news. In time she will be off the TPN and getting full feeds of breast milk. Things are continually progressing with Haley and Rachel. Time is passing and they are growing. There have been many good things and many miracles that have happened with our girls. We are so grateful for the good, the blessings and the many special moments we have had with them. Sometimes it's easy to get caught up in the things that go wrong, but its the little miracles and the good things that are the most important. Our beautiful little girls have reached yet another milestone today, they are 34 weeks gestational age. We continue to be amazed with both these beautiful daughters of God. They are our everything, we have so much fun when we are with them. There is nothing quite like it.
Holding Haley after 2 long weeks
Holding Haley after 2 long weeks
Tuesday, October 20, 2009
Eye Surgery
Today the girls had their eye exams, by their pediatric ophthalmologist Dr. David Coats of Texas Children's Hospital. He seems to be a nice friendly guy, and most importantly he is a very reputable pediatric ophthalmologist. Little Rachel's eye exam reveled ROP which is extremely common in premature babies. ROP is Retinopathy of Prematurity, basically ROP is a problem with the way the blood vessels develop on the surface of the retina. When a baby is born prematurely these blood vessels are immature like the rest of the baby. In some premature infants the blood vessels start to grow the wrong way. Instead of branching like a tree the vessels link up side to side and in some cases grow away from the retina towards the center of the eye. The severity of ROP is graded from stage one to stage five. Stage one is the mildest and stage five the most severe. Rachel is a stage three. Dr. Coats explained that Rachel would have to have laser surgery tomorrow to try and correct the problem. He told me that he has been doing these laser surgeries now since 2003 and it has worked on all except for one of his babies. We are nervous, but he made us feel better by telling us that. We will hope and pray for the best and except what ever the Lord wants for her. She is a little fighter she will pull through this. Haley seems to have had a pretty good day today. Her eye exam didn't show ROP yet, but the eye doctor said she will most likely need the laser surgery in the future. Dr. Thompson decided to start her back on breast milk for the first time since before her surgery. She did have a little poop come from her ostomy, which is a good sign. Haley is finally getting fed a small amount of breast milk! Yay for Haley! We hope all goes well and she will be pooping as well as Rachel. Thomas and I got to change Rachel's diaper this evening and she gave us a big poopy diaper. After I got a new diaper on her she pooped even more so I had to change her again. That little stinker! We love it!
Monday, October 19, 2009
Personality, Attitude and Blessings
Guess what? Rachel once again pulled her tube out again today. That makes 4 times in one week. She just loves to keep us on our toes! I love her attitude and personality. She seems to get what she wants when she wants it (we will have to break her of that habit). She is a strong and feisty little thing. She has her daddy's personality. Haley has such a calm and easy going personality - like mine. She had her eyes wide open when we were there today. She has such beautiful big eyes. Today the surgeon Dr. Bloss probed into her ostomy, when he did that he found kind of a mucus plug is what they referred to it as. Haley had better bowel sounds after Dr. Bloss did that little procedure, but still no poop. The doctors are contemplating whether to start her back on breast milk tomorrow, We really hope that happens. We have discovered one thing about both our little girls and that is they love to have their heads rubbed. It calms them down and puts them to sleep. The girls received a priesthood blessing by our good Bishop and Thomas early this evening. We have such a great Bishop, he has always been there for Thomas and I. He is such a great man, with a big heart. I feel confident that our precious daughters will be ok. I always seem to feel so much better once they have been administered to by the Priesthood of God. Big thanks to Bishop Hales for everything he has done for my family, we truly love and appreciate him for his kindness and friendship, couldn't ask for a better Bishop. Being with our girls is the always the highlight of our day. Haley and Rachel are so enjoyable to be around; They bring us so much peace and happiness as we spend time with them each and everyday. Our love for our daughters is unbound, and words can not begin to express our deep concern and love for them. Despite the wild ride it has been, it has all been worth it. Love is what makes the ride worthwhile. Yes the loss of our precious angels has been very hard, but they will always be ours and they will always be loved. A day doesn't go by that I don't think about them. I look forward to that day when we are reunited as a family. Families are forever and that is something that no one can take away from us.
Haley
Rachel
Haley
Rachel
Sunday, October 18, 2009
She did it again!
Well Rachel did it again - she pulled her tube out! She has done this 3 times this week. It looks like the problem is that she likes to lift her head up while laying on her tummy and when she does that it yanks the tube out despite being taped down. The doctor did start her on some IV antibiotics (yes she has a new IV - no longer IV free). The doctor suspects she may have aspirated some breast milk due to her breathing tube being pulled out so many times. The doctor started the antibiotics as a preventive precaution. She will be fine. Rachel is so feisty! Thomas held Rachel today and he got nervous because she was much more awake than usual and she was also not very happy. Thomas was more nervous than I have seem him with the girls. He got nervous about her heart rate going high as she got angry. Thomas and I have a lot to learn when the girls come home as there will be many times the girls will be unhappy. Rachel is just so content laying on her tummy. It was so nice to see Rachel so awake with our visit with her today. She had her eyes wide open. Rachel has mommy's eyes. She is so adorable. Haley our calm princess is doing well. She doesn't get to lay on her tummy right now due to her bowel surgery, but she is content laying on her back. Haley still has not had any poop. The doctor's don't seem concerned yet, but we are always worried about our little girls. We just want them to be well and happy. We know with time our little miracles will be strong enough and well enough to come to the comfort of their own home with mommy and daddy. We just love these little girls so much. Each time we visit them it is harder and harder to leave. We are so attached to them. We hate to leave the NICU every time we are there, it is just so hard to say good night to our daughters and not be able to have them in the comfort of their own home. We will get there, the Lord has been so good to us. He has carried us through the rough nights, He has pushed us along when the road seemed to be a dead end. We have truly witnessed the tender mercies of the Lord in our lives these past few months. While the journey has been long, hard and down right difficult at times, We have experienced the true tender mercies of a loving Heavenly Father. We owe everything to him and His Holy Son Jesus Christ.
Rachel in her favorite position - on her tummy.
Rachel in her favorite position - on her tummy.
A day closer...
Today our little girls have had a relatively good day. Haley is hanging strong still from her surgery nine days ago though the thing we would like her to do is POOP. She has not had a bowel movement since before her surgery. They say each baby is different, but it can take up to a week or even longer. Haley does have bowel sounds, just not great ones yet. She will get it going pretty soon, I know she will be fine. Haley is down on her ventilator settings again as well. She is moving in the right direction. The Doctors tell us to give her time and she will poop. Little Rachel is a spitfire, and loves to move around a lot. She has pulled her breathing tube out twice this past week. She really wants the tube out I guess. They had increased Rachel's feeds again today, and has tolerated it very well. Rachel also is on lower ventilator settings. She is strong. She's already lifting her head up when she lays on her tummy. Rachel and Haley are similar with regards to their lungs, and ventilator settings. We are so grateful for their progress. Everyday they progress the closer they are to going home.
Rachel in mommy's arms
Haley's foot on daddy's hand. Wow her foot is so small!
Rachel in mommy's arms
Haley's foot on daddy's hand. Wow her foot is so small!
Thursday, October 15, 2009
The little things...
Rachel and Haley are such cuties! Tonight after daddy held Rachel and she was being put back into her bed, she had her eyes open and was moving around so much. She made us smile. Haley also made us smile as she was sucking away on her pacifier. She just loves it so much. It's wonderful how the little things they do make us smile and make our love for them even stronger. I love to stare at them and admire their little hands, fingers, feet and toes. Sometimes its the little things that bring us joy. It amazes me how much they have grown the past 9 weeks. They are so strong and resilient for what they have endured so far. They are true miracles.
Haley sucking on her pacifier. It tends to fall out so I had to hold it in.
Haley sucking on her pacifier. It tends to fall out so I had to hold it in.
Wednesday, October 14, 2009
Continued progress
We were able to hold little Rachel this evening before she went to bed for the night. This is always the highlight of our day. We have not been able to hold Haley just yet due to her surgery. We will be able to hold her very soon. Rachel and Haley seem to be adjusted to there new home away from home. Hopefully they will be here in their real home soon enough. It is so much nicer to have the girls across from each other, than going into different nurseries to visit. The girls continue to make progress. Rachel is IV free! Her PICC line was removed today since she is no longer getting the TPN. She is now getting all her nutrition from breast milk + human milk fortifier. Haley's ventilator settings have been weaned down more today. She is still not getting breast milk since her bowel surgery was not quite a week ago. She should be getting fed breast milk within the next couple of days. Haley and Rachel continue to grow, progress and amaze us everyday!
Tuesday, October 13, 2009
New Home For The Girls
Today was move day for the girls. Since birth our babies were in a temporary location until the remodeling of the level 3 NICU was completed. Well is was finished and the girls were moved into it today. Haley and Rachel are finally right next to each other. Before, our babies were not all together. We are so happy to finally have them next to each other. This afternoon Rachel decided to pull her breathing tube out,so the doctor decided to try her on a C-Pap. That experience only lasted an hour or so, because it was a little too much for her. She had to be re-incubated, and she was fine after that. The TPN was discontinued today therefore Rachel is now getting full feeds. We are so happy about her progress with feeding. Haley continues to plug her way along the road to recovery from the surgery she endured five days ago. She has actually done very well with it, she has not had to have medications to support her blood pressure, or suppressors in any way because of the surgery. We are so happy Haley and Rachel are doing well. We continue to adore these two beautiful little girls. We truly love them both more than words can express. They have brought so much joy to Thomas and I. We feel not only blessed but privileged to have them as part of our family for eternity. We would and will do anything for our little Haley and Rachel. We are so grateful to Heavenly Father for allowing these precious daughters of His to come down to earth and to be with us. We know the road ahead is a long one, it will have bumps in the road I am sure, but we are ready and willing to take it head on. We want more than anything to bring both of our remaining children home. I know they will bless our home tremendously. They both have a unique and special spirit about them. We love and admire the strength they have, for they are special little girls to Thomas and I. Thomas and I continue to plow forward in faith, trusting in God. He has and always will bless us as we strive to do his will in all things. It has been extremely painful and heartbreaking to have lost our precious sons and daughters. Each one has brought heartache and sorrow. We find great comfort in the words of the greatest Prophet of this dispensation who once said "when the mother is deprived of the pleasure and joy of rearing her babe to manhood or to womanhood in this life, through the hand of death, that privilege will be renewed to her hereafter, and she will enjoy it to a fuller fruition than it would be possible for her to do here. When she does it there, it will be with the certain knowledge that the results will be without failure; whereas here, the results are unknown until after we have passed the test". We know this to be true, thank God for his matchless love, for it is through His Son Jesus Christ that any of this is possible.
Rachel with her pacifier
Haley with her pacifier
Sign made by someone at the NICU on Oct 12
Rachel with her pacifier
Haley with her pacifier
Sign made by someone at the NICU on Oct 12
Monday, October 12, 2009
Holding strong and pressing forward
Today has been difficult for Thomas and I,because we miss our little Ashlyn very much. She was such a beautiful little girl. She was such a fighter, she has touched our lives forever. We continue to move forward in our lives. It has been extremely difficult to see four of our children slip into the eternities right before our very eyes. We dearly miss each one of them who have gone on before us to prepare the way for Thomas and I and their two sisters (who remain on this side of the veil). We are so grateful for the knowledge that we do have that God does live, he is real, that His Son Jesus Christ has paid the price for me and for all, so that families can be united for eternity. We know that the grave is not the end. What comfort this knowledge has brought to Thomas and I these past few months. We started preparing tonight for that glorious day when our 2 little girls come home. Still don't know when that will be, but it will happen. Thomas and I put together a crib that was so generously given to us by a wonderful dear friend whom we have come to admire, love and look up to. She is a true example of the pure love of Christ. We adore the new crib. Thank you for the kindness. It only took Thomas and I a few hours to put it together, but hey we did it together.
The girls continue to do well. Haley continues to move forward in her recovery from surgery. She has been able to be weaned down on her oxygen and better yet on her ventilator settings. She is such an amazing little girl. Although she did scare us a little this evening when we visited with her, her heart rate was up for a good while, but I called this evening and it had come back down to normal. Rachel is doing very well, she continues to thrive. She also is down on her ventilator settings, as well as her oxygen. She loves to be on her belly, and it shows with her oxygen saturation's. Both girls had a very eventful day, with all kinds of tests such as echo cardiograms and EKG's. Rachel had a head ultrasound as well. They both seem to be doing relatively OK. We are so thankful to a kind and very wise Heavenly Father who not only knows us by name, but knows how to succor us from our infirmities. We have truly felt the tender mercies of a loving Heavenly Father and His Son Jesus Christ. We will continue to move forward with trying to do what is right for our little family both here and on the other side of the veil.
Here is the crib that was so graciously given to us by the kindest person.
The girls continue to do well. Haley continues to move forward in her recovery from surgery. She has been able to be weaned down on her oxygen and better yet on her ventilator settings. She is such an amazing little girl. Although she did scare us a little this evening when we visited with her, her heart rate was up for a good while, but I called this evening and it had come back down to normal. Rachel is doing very well, she continues to thrive. She also is down on her ventilator settings, as well as her oxygen. She loves to be on her belly, and it shows with her oxygen saturation's. Both girls had a very eventful day, with all kinds of tests such as echo cardiograms and EKG's. Rachel had a head ultrasound as well. They both seem to be doing relatively OK. We are so thankful to a kind and very wise Heavenly Father who not only knows us by name, but knows how to succor us from our infirmities. We have truly felt the tender mercies of a loving Heavenly Father and His Son Jesus Christ. We will continue to move forward with trying to do what is right for our little family both here and on the other side of the veil.
Here is the crib that was so graciously given to us by the kindest person.
Sunday, October 11, 2009
Ashlyn Louise Stansel
Today has been an extremely difficult day in some ways and very rewarding day in other ways. Our little beautiful Ashlyn was released from this world this evening around 8:30pm. Thomas and I were able to hold her while all the support was removed from her tiny little body. The spirit was so strong, impressions came that she is ours for eternity. I felt she was telling us mom, dad don't be sad, I am not gone just in a better place waiting now for dad and you to meet me there, I came and received my body, I am set now. Ashlyn had been fighting for about a month or so with a nasty form of Pneumonia call Yeast Pneumonia. She fought so hard to beat it, but just couldn't beat the nasty illness. Thomas and I had to make probably the hardest decision in our lives this evening, though much prayer and fasting we decided this evening to pull our daughter off her ventilator and all support and let her finally go back to a loving Heavenly Father, who I know has welcomed her home with open arms. Ashlyn had really started to deteriorate the past week or so. Her O2 saturation's the past day had been dropping into the 50's and 60's. We decided enough was enough for her to go through. While we know where she is, it still hurts so much knowing we won't be able to bring her home with us. I know she is safe, I know she is happier now, but we miss her terribly. We thank our Heavenly Father for the priceless time we were able to spend with her. How grateful we are for Our Savior Jesus Christ who gave His life in a selfless sacrifice for us, which sacrifice will allow our family to be reunited again one day. What great comfort that knowledge brings to us in such times as these. Thomas and I are overwhelmed with the love we feel from our Savior, He has charted the course for our little girl and for us, He has and will continue to uplift us and to pick us up when we don't feel like going on. Our little Ashlyn is now home cheering us on to one day be worthy to reunite with her and our other five beautiful children that have gone on before us. We owe everything to the Savior, we love and cherish His life, because we know it is only because of Him we can see our precious children again someday. Goodbye to Ashlyn for now, but please know we love you and will miss you more than you will ever know. Now the rewarding part about today is that Haley and Rachel are doing extremely well. They both seem to be tolerating all the adjustments to their ventilator settings. Haley is now weighing in at four pounds even and is 14 1/2 inches long. Haley I think has surprised the doctors with how well she is doing especially after having surgery 3 days ago. We aren't surprised simply because Thomas has given Priesthood Blessings to her, and because we know who is in charge. I know from first hand experience what the sacred power of the priesthood can do to bless lives. I am grateful for a husband who is able to have it and use it to bless me and my little girls. Little Rachel continues to grow and flourish each day. She weighs 3 lbs 7 oz and is 14 inches long. She is tolerating her feeds very well, she continues to eat like a champ. She loves to lay on her belly, she does much better with her oxygen saturation's on her belly than her back. We were able to hold her this evening and then again I felt the Spirit so strong telling me she will be home sooner than later. We hope and pray that Haley and Rachel continue to grow and develop, so that we can bring them both home some day soon.
Here is Ashlyn when she was about 2 weeks old. That's Daddy's finger in her hand. We will always remember her this little.
We love you very much little Ashlyn. Love always, Mommy and Daddy
Here is Ashlyn when she was about 2 weeks old. That's Daddy's finger in her hand. We will always remember her this little.
We love you very much little Ashlyn. Love always, Mommy and Daddy
Saturday, October 10, 2009
Love, Joy and Sadness
Our precious Ashlyn is not doing well at all. Her kidney function is getting worse. She is in renal failure and this is making the edema worse. The doctor said that her kidneys are beyond the point to where they could get better. They are just too far gone. They had to increase the ventilator settings to provide more support. She is just not doing well overall. This has been so hard. It hurts to see her so sick. We hoped and prayed that she would get better, but it is just not the Lord's will for her. We love her so very much and will miss her when she goes.
Rachel is doing very well. She now weighs 3 lbs 7oz. She is growing well every day. Her feeds have been increased more. She is almost to full feeds. The TPN has been decreased more and will be discontinued very soon. We are so proud of Rachel and the wonderful progress she has made. She definitely is behaving so she can come home with mommy and daddy sooner.
We are also so very proud of Haley. She is recovering very well from the surgery. Today the settings on her ventilator were decreased. The doctor seemed surprised to be able to make those changes on the vent seeing she had surgery only a couple of days ago. We hope she will be able to get fed again soon and get her TPN decreased.
Rachel is doing very well. She now weighs 3 lbs 7oz. She is growing well every day. Her feeds have been increased more. She is almost to full feeds. The TPN has been decreased more and will be discontinued very soon. We are so proud of Rachel and the wonderful progress she has made. She definitely is behaving so she can come home with mommy and daddy sooner.
We are also so very proud of Haley. She is recovering very well from the surgery. Today the settings on her ventilator were decreased. The doctor seemed surprised to be able to make those changes on the vent seeing she had surgery only a couple of days ago. We hope she will be able to get fed again soon and get her TPN decreased.
Thursday, October 8, 2009
Surgery Day!
Haley had her surgery today around 12:30 pm to fix the obstruction. Dr. Bloss the pediatric surgeon performed the operation. Thomas said to Dr. Bloss as he was leaving the NICU to go to the operating room, "please take care of her", he replied back "just pray for me and I will do the rest". Then he said his famous line "I will treat her like my own, I know her on the inside and out". We truly admire and appreciate Dr. Bloss and his great ability to not only be able to perform surgeries with great outcomes, but also his kind gentleness towards our children and towards us as parents. He is one of the best pediatric surgeons around if not the best. Dr. Bloss told us after the surgery was done that it went better than he expected. Haley had a perforation that became an obstruction in the distal small bowel (lower small bowel). He removed a very small amount (4 1/2 cm) of her small bowel. Dr. Bloss told us that she has plenty of small bowel to absorb nutrients and won't have short gut. He also said that her ileocecal valve (connection between the small bowel and the large intestines) was sick but should recover. So Haley is doing good, but is still recovering after all the anesthesia. She is a fighter and will recover fully. Ashlyn is slowly getting worse and continues to decline. Her oxygen saturation is decreasing and her blood pressure has decreased some, but she still has a good heart rate. She is not urinating and it appears she is in renal failure. We are so heart broken and wish for the best for her. Rachel is doing well. She so far doesn't have an infection. I'm hoping it stays that way and my intuition was wrong. Her feeds have increased and she is tolerating them well. Her IV nutrition (TPN) has been decreased and the lipids (IV fat) were discontinued. Yeah!!! I'm so happy she is no longer getting the lipids. Lipids can be damaging to the liver so it's better to not be getting TPN and lipids for a long amount of time. She seems to love laying on her belly, or at least it shows in her O2 saturation's. What ever may happen to Ashlyn one thing is very clear to Thomas and I, she has touched our lives for eternity. She is a beautiful little girl. We are so gratefully to our Heavenly Father for allowing her to be with us how ever long that may be. I feel the Spirit so strongly every time I am with her or any of the other girls. These are His precious little girls, He created them as He has all of us. I have no doubt that a loving Father in Heaven can perform miracles, and does often. I know that if He wants Ashlyn on this earth she will remain with us, but if she is called home to that God who gave her life than that is a miracle as well to me. Why because of the miracle of the Atonement of our Savior Jesus Christ. He gave His life in a selfless sacrifice so that we would be reunited as families when we pass on. I know that as Thomas and I live righteously in this life we will be able to be reunited as a family with all our children in the world to come. God be thanked for His Son Jesus Christ for all that he did and continues to do for us. Even though this experience has been extremely difficult and challenging, it has brought an increased knowledge of the Saviors atonement in our lives in a very real way. We are so thankful for the blessing we do have, despite the trials of life. "Life is beautiful when we learn to find the beauty in it".
Haley after the surgery. Dr. Bloss drew a picture on the tape/dressing covering her incision.
Haley after the surgery. Dr. Bloss drew a picture on the tape/dressing covering her incision.
The Good and The Bad
It seems like all the days are blending together lately. Today was a pretty good day for two of our little girls. Ashlyn's health continues to deteriorate, she is struggling to get the oxygenation she needs to sustain life. It isn't critically low just yet but seems to be creeping that way. She has so much edema (fluid) that it is getting into her lungs. She seems to be going into renal failure as she has stopped urinating completely. We continue to ask the Lord to do what is best for her. It is his will not ours as hard as that may be. It's extremely painful to see her struggling, it's also very hard to except that she may pass very soon, but I know that what will happen is for her good. Haley did really well today. She was down to 25% Oxygen, with all her vitals stable as well. She has no idea what is going to happen to her tomorrow. She will have surgery tomorrow afternoon to correct the obstruction in her small bowel. We hope and pray that the surgery goes well and that the Lord will guide the surgeons hands during the procedure. We also pray that they don't find anything worse than what they are expecting when they open her up. I know that she will be in good hands, Dr. Bloss is a great guy and a great surgeon. He has a famous line he says every time he has done a procedure on our girls "I will take care of her like she was my own. I know her from the inside out". We definitely appreciate Dr. Bloss and his excellent skills. We pray that our Heavenly Father will guide and direct him tomorrow during the surgery. Rachel seems to have dropped her blood pressure a little today, the Doctors don't seem to think much about it. I hope she isn't coming down with another infection. As a mom, my intuition suspects she has another infection from her central line. Her Oxygen requirements have been up a little more today than they had been, but that could be because of some of the pressure changes that Dr. Gee has made on her ventilator. He is trying to wean her down little by little. I hope she can be placed on a C-Pap sooner than later because it is much better for the lungs than the ventilator. It has been a good day and a bad day as well. The good day comes because Rachel and Haley seem content and stable. The bad day because Ashlyn seems like she is slipping closer and closer away. It breaks our heart to think she may not be with us much longer, but all we want is what is absolutely best for her. We continue to move forward and trust in an all knowing and all powerful Heavenly Father. We know that God is in control, He will do what is best for us like He always has and He always will.
Tuesday, October 6, 2009
Our three beautiful girls
Well it looks like Haley is going to have the surgery to fix the obstruction in her bowels sooner than later. It's planned for Thursday. We are hopeful it will all go well. Haley is a strong one. I can tell this about her whenever I see her. She has a don't mess with me attitude. Rachel is still going strong. I got to hold her tonight. She just slept soundly in my arms. Rachel also is getting more breast milk. Her feeds were increased to 5 ml every hour. The breast milk she is getting is now being fortified with the human milk fortifier. Her TPN (IV nutrition) is being weaned. I'm so happy with her progress. She amazes me. She is such a miracle. Ashlyn is doing about the same. She is just not improving. Our heart breaks for her. We love her so very much and wish she could be doing as well as her sisters. We continue to hope for the very best for all our girls. The Lord has blessed our little family through all that has happened. Looking back we have been through a lot, but he has carried us when we felt we couldn't go on. He has been there for us at all times. We are grateful to Him for all that we have been blessed with. I know He is in control, He will only do what is best for our family.
Monday, October 5, 2009
Growing up fast
Another day down and not sure how many to go before we can bring the girls home. We are excited for that day when it comes. Haley continues to struggle with her obstruction in her small bowl. She was a little more distended today than yesterday. They have a tube in her gut to suction out the air that builds up. They are waiting to clear up the infection she has before they open her up and fix the obstruction. She has had a relatively good day despite that. When we got to the NICU this afternoon her eyes where wide open. She is so cute. Rachel seemed to have a great day as well. She has had several good days in a row now which we are so grateful for. They were able to wean her ventilator pressures a little more today. We hope and pray she can come off the vent very soon, and onto the c-pap. Our sweet little Ashlyn continues to fight the good fight. She has had a better day today in terms of urinating more. She has a stable heart rate and blood pressure. Her O2 requirements were able to come down again today as well. The bad news is that her head ultrasound showed increased size of the ventricles in her brain. The doctors say they can't do anything about it until she recovers from the illness that currently is upon her. She is so fluid overloaded that there is no way they could do anything. We continue to worry and stress about her and her health. We constantly ask the Lord with guidance in what we can do for our precious little Ashlyn. I know that God our Father will guide us to know what questions to ask the doctors and what things we can do to help Ashlyn. I know that as we do our part in learning and researching things that the Lord will help us to know what questions or suggestions we can ask and make to the physicians taking care of our girls. So overall the girls seemed to have a good day. We are so thankful for the good days. It is difficult at times to go to bed and sleep while we know one of our girls has had or is having a bad day.
Haley looking so cute
Rachel sure has a lot of brown hair
Haley looking so cute
Rachel sure has a lot of brown hair
Sunday, October 4, 2009
Two Months Old!
Today is the girls two month birthday. Ashlyn, Haley and last but not least little Rachel have hit their two month milestone. We are so grateful that they have made it thus far. We are grateful for each one of them. It is so amazing to see each of them with their own personality, with their own identity. They all act so different from each other. Tonight we held Haley for the second time. She is doing good even though she still has an infection. Her favorite nurse Kodi was taking care of her. Haley loves her! Thomas changed Haley's diaper for the first time. He did a good job. Rachel is still doing well. Her vent settings were weaned more today. The doctor did mention that if Rachel continues to do well and the vent can continue to be weaned down, then they will extubate her in a couple of weeks. It will be so nice to have her off the vent. Ashlyn continues on. She continues with the edema which is still not coming off. Her urine output is still not that great. She really needs to pee more to get that extra fluid off. We hope and pray for a miracle for her. We will just have to wait and see what happens. The doctors are doing all they can for her. It is so awesome to have these precious girls who have touched our lives eternally already. We love and cherish their special spirits. We have been so enriched and blessed by them. Thanks be to God for allowing them to come to earth and to be with Thomas and I.
Saturday, October 3, 2009
Love of my life
The girls continue to amaze me. Haley had her central line removed today. She is doing well and looking as cute as ever. She still has her attitude. She misses her favorite nurse Kodi who was not assigned to her tonight. I got to hold Ashlyn tonight. Despite the challenges she is going through we are still able to hold her. That girl has a strong will! I only wish I was as strong as her. She has been through so much! We hope and pray that she will recover completely. Rachel is good. When we saw her today she was down to 28% oxygen. That is the lowest I have seen her at. She is so close to room air (21%). Thomas got to hold her tonight. She is so adorable! Rachel weighs 3lbs 2oz. She is now being fed 4 ml of breast milk continuously. She is tolerating it very well. Her nurse said that when she bathed her tonight, she looked as if she was smiling. She must have liked her bath. So today was not a bad day for the girls. We hope for more good days as it makes us happy to see our little girls doing as well as can be. We are grateful for their beautiful lives and we won't give up on them. They are here to bless many lives. I know for certain they have blessed our lives. They will be our pride and joy forever. They have brought us so much love. It is their little lives that keep us going even through the tough times. They are the love of my life.
Rachel holding my finger
Daddy and Rachel
Rachel holding my finger
Daddy and Rachel
Friday, October 2, 2009
Hanging On...
The past two days have been extremely hectic with all that has been going on. Rachel is doing better than the other two girls. We are happy that she is pooping very well and that her bowels are working as they should. I got to change my first poopy diaper a couple of nights ago! I loved it! She did a good job making a dirty diaper for mommy. Rachel is consistently down on the oxygen and the nitric oxide has been discontinued. This means her lungs are doing well. We are hoping within the next few weeks she will be able to go onto the C-pap. It will be so nice to see her off the vent. Our constant worry and fear is that any of our girls will get an infection that will interfere with their progress. They have all had their fair share of infections and we just don't want to see any more of them. Haley is doing fairly well thus far despite some issues that are going on. Her central Line will have to come out because it's infected. We hope she will be able to get a new line in a few days. There needs to be 2 days in a row of no positive blood cultures before she can get a new line. She will also need surgery on her small bowl to fix the obstruction. They will hopefully take care of that within the next two weeks. They have to wait that long because they want her to get ten days of antibiotics to help fight any infections. A GI doctor from my work looked at her yesterday and he said she will be fine with the surgery. Little Ashlyn continues to fight on despite the fact she has been really beat down by this nasty yeast pneumonia she experienced almost a month ago. She seems to be having a difficult time fighting back completely from this illness. Only time will tell with her. We continue to rely on an all knowing and all loving Heavenly Father, who continues to bless us. We feel he has lifted us up when we have felt we can't go on. God does live and does love us. He will not allow my family to endure any more trials than is necessary for our growth and our learning. We will move forward and continue to do what is best for our precious little miracles.
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