Busy Stansel home

The days and nights seem to be running together in the Stansel household lately. We stay busy with the girls and their busy schedules of medications, feedings and doctors appointments. We are loving having our precious little miracles here with us at home. They both are so opposite of each other. Rachel sleeps well at night and Haley doesn't. Rachel is calm most of the time, but Haley is fussy. Despite their differences, Rachel and Haley are such beautiful little girls. We are eternally grateful the Lord has allowed them both to remain with us.

Mommy holding her beautiful girls



Rachel is such a sweet little girl. She loves to look around and watch everything around her. She is an inquisitive little girl. Rachel has only been home 3 days and has already made her first trip to the ER. We had to rush Rachel to the E.R. last night because her g-button in her stomach was accidentally pulled out. So we took her back to a familiar place - Texas Children's Hospital. We had to take her to the ER to get it replaced since the hole can close up fast. This visit to the ER was actually one of the quickest visits we have ever made. The button was replaced without any problems. Rachel was a trooper through the whole thing. Hopefully we won't have to go again, but if we do we are grateful to have Texas Children's Hospital.

Rachel



Haley is strong willed and feisty. She knows what she wants and usually gets it. She has attitude. She is strong as well. She is able to push her feet against the ground when we hold her up. Her head control is improving. Haley continues to sleep early in the evenings and wakes up pretty early in the mornings. We try really hard to keep her awake during the early evening hours, but to no avail. She just sleeps through everything. I think she has gotten a little better sleeping at night since coming home from the hospital for the second time. With time her sleeping at night will get better.

Haley enjoying the swing



We love our little girls so very much. They continue to grow and seem to enjoy being home much better than the hospital. We hope and pray that they will be able to develop and overcome the challenges they face physically and neurologically. We will have many different people working with them. We know that what will happen with our beautiful girls will be the will of the Lord. Heavenly Father will be there to help our little girls through their physical challenges. We are grateful to know that our Heavenly Father will do what is best for Rachel and Haley in their lives.

Rachel is HOME!!!

It has been a busy past couple of days with the girls. They both are doing really well at home. They are becoming acquainted with each other as they have been apart from each other since October. They bring so much joy and fun to our little family.

It's official Rachel Diane Stansel has come home finally. It has been a long journey with her in the hospital almost 7 months. We are so happy she is home. She had a great first night home. She even slept through the night. Rachel loves to just look around and see what is all around her. She seems to enjoy being at home. Well it is either she enjoys being home, or she is so excited to finally be out of the hospital. She continues to grow like a weed. She was weighed today at the pediatricians office. She is now 10lbs 14oz. She is becoming such a big girl. We love her so much.

Rachel ready to go home



Little Haley continues to hang strong at home. She also was weighed today at the pediatricians office, she is now 10lbs 3oz. She continues to have her days and nights mixed up, but we are working with her on that. Haley is so feisty, we always thought Rachel was the more feisty one, but Haley gives her a run for her money. We are so blessed to have Haley with us. She brings so much happiness to us. We love and cherish her as well.

We finally got a first family photo and photos of both girls together!



The girls getting to know each other

Rachel's discharge planning is in progress...

Things are still going forward for Rachel's discharge on Wednesday. Today she had her g-tube replaced to the g-button which will be much easier to use at home. Rachel also got her 6 month immunizations. Her discharge date is officially this Wednesday February 24th. That will be her home coming day unless something happens between now and then. We are so excited to have her join us for the first time at home. It will be a great reunion between her and her sister Haley. We can't wait to finally take pictures with the girls side by side.


Haley is doing well. She continues to sleep most during the day and awake most of the night. We take shifts during the night so that we both get some sleep. I try to sleep some during the day, but doesn't always work out that well with all that needs to be done around the house. Haley continues to grow like a weed weight wise but her length seems to be way off. We hope she will have a growth spurt length wise. She is quite a bit fussy when she is fed because of her reflux. She is on prevacid, but it really doesn't seem to be working very well on her. We will discuss it with Dr. Farrior on Thursday when we see him again. Haley loves to make lots of cute noises. We are blessed to have such precious little girls, and are looking forward to the many years ahead.

Day or Night?

Life continues to move forward in the Stansel home though we would love to get Haley on a regular sleep routine. She loves to sleep during the day and fuss during the night. She just doesn't realize when it's day and when it's night. We are so grateful to have her here with us. She has enriched our home with much happiness. Haley loves to wiggle around. She is also vocal and makes lots of baby noises. She definitely isn't one who likes to sit still but then again what baby does. Since her eye sight isn't great we constantly try to work with her sense of touch and feel. We put her hands on our faces and try to connect with her in any way we can. She is such a special little girl. She has such a special spirit about her as does Rachel.

Haley in her swing with her pacifier. She gets so upset when it falls out. We try to come up with ways to keep that pacifier in her mouth. She just can't keep it in her mouth yet.



Rachel continues to progress and move forward. She is now up to 10lbs 3.3oz, she is becoming such a big girl. Her oxygen has also been weaned down to 1/8 liter. We are anticipating her arrival home either next Wednesday or Thursday, that is of course if everything continues to go smoothly for her. She will hopefully be getting her G-button put in on Monday by none other than Dr. Bloss. I think this has been all that she has been waiting for in order to come home. We are happy that Rachel is doing as well as she is with such unfavorable beginnings. We continue to pray for her development and happiness.

Rachel looking cute

Haley's Home!

We are a day late on this announcement, but are happy to say that Haley returned home yesterday (2/17). We are getting back into the routine of things back at home. Her first night home was not the best. She was fussy and crying due to her reflux. We can tell it hurts her. She is on Previcid. We also think she was getting used to the change in environment. She slept most of the day today since she didn't get much sleep. Mommy and Daddy are tired and hope little Haley has a better night tonight. We all need good sleep! She had an appointment with Dr. Farrior her pediatrician today. We absolutely love Dr. Farrior. He is a great doctor. He is very thorough with Haley, and we truly feel that he has a deep interest in her well being. We would recommend him to anyone. Haley will be visiting many different physicians in the next few weeks and months. We are so thankful to have her back home as she brings much happiness to our home. Haley's updated weight is 9 pounds 13 oz.

Haley home again



Sleepy Haley




Rachel also has a new home. She was moved to the level 2 NICU at Woman's Hospital today. Rachel is on her way out the door soon. In fact Dr. Jarrell told us yesterday that possibly by the end of next week she could very well be home with Haley. We hope to have her join her sister next week. She is growing like a weed, she is over 10lbs now. We will hope and pray that she will be with us here at home sooner rather than later.

Rachel

Getting closer to coming home

There is finally talk from the doctors for both girls about letting them come home. In fact, Haley is scheduled to come home tomorrow (2/17). She will be coming home on oxygen and medication to help control the pulmonary hypertension. She is tolerating her feeds well and is continuing to grow. She is an active little girl and likes to wiggle and move around a lot. During our visit with her today, she was so wiggly and then finally she fell asleep in my arms. She looked so peaceful. She didn't even wake up when I put her back in her crib. Haley is such a lovable little girl and just so darn cute.

Haley sleeping away



Rachel was also a sleepy one today. When we visited with her she was wide awake, but after I held her she got so comfortable and fell asleep. It was hard to put her back in bed as we love to hold her. Rachel is doing well and has hit the 10 pound mark. Her doctors are thinking that she possibly could make it home at the very end of February or early March, what a day that will be for Thomas and I.

Rachel snoozing in my arms



Both Rachel and Haley have been taken care of by so many wonderful doctors and Nurses. We will miss them dearly when the girls come home as we have come to know some of them so well. We will be forever grateful for their hard work and loving care.

The Girls first Valentine's Day

Happy Valentine's Day to all. It's the girls first Valentine's day, and we took a few photos of them in their valentine's outfits. They looked so cute in them. Thomas and I had a great trip back to Anaheim where he had served his mission over 13 years ago. I was so happy for him because he was able to see a lady that he had baptized when he was a missionary there. She is a beautiful person, and it meant so much to Thomas to see her and to see the areas he had lived and served in. We had a relaxing time in California and enjoyed the time spent together as a couple. The girls were well while we were away. They were well cared for. We appreciate all the hard work from the nurses and doctors at Woman's hospital and at Texas Children's hospital.

Haley wearing her Valentine's outfit



Rachel wearing her Valentine's outfit



The back of their cute outfits



Rachel continues to grow, she is weighing 9lbs 15oz. She is such a big girl now, and it seems just like yesterday that she was just a pound. We hope and pray she will be able to come home within the next few weeks. The doctors seem to be hinting that way, but we shall see. Rachel continues to tolerate the feedings schedule she is on. She takes 77cc of formula over a 45 minute period. She has been doing great with that. I think the next thing she will get is to replace the g-tube with the button, then she is completely ready to go home. We love our little Rachel so much. It was hard being away from her for a few days, but we are grateful for her progression.

Little Haley has finally started to grow again, she had lost the fluid weight four days in a row after she was admitted. Haley weighs 9 lb 2oz. We hope that what the doctors have done will be what she needed to over come the struggles she had. We missed our beautiful Haley as well very much. We owe a great deal to the Lord for all that He has done for Haley and Rachel. We love our girls with a love that has no bounds. They are our girls for eternity. We are grateful for the knowledge that we do have, that our children are sealed to us, and because of that we will have them beyond this life. We owe everything to our Heavenly Father and his son Jesus Christ. They continue to help us and most importantly our little girls. We are ready for the challenges that face us ahead, but we know that the almighty will help us along. We are so blessed to have Rachel and Haley. They have brought so much joy and happiness to our family.

Here are a few pictures from our trip:

Thomas and I in front of the San Diego Temple. This temple is so beautiful!



Thomas walking on the beach in Newport Beach



A beautiful scenic spot on our way to San Diego



The big Ferris Wheel we rode at California Adventures in Disneyland



Us on the Ferris Wheel

Ready for some Relaxation

Thomas and I have decided to get away for a few days. We have a good friend who suggested that we go and take a break from everything that has been going on the past few months. She provided us with airline tickets to do so. We are so grateful for her and all that she has done for us. I don't think I have met a kinder person than this friend of ours. She truly is an amazing individual, who has been at our side through all the struggles we have had the past six months. We love and cherish her and consider her a true friend. We will be having fun in Los Angeles/Anaheim California. We plan on going to Disneyland and doing some sight seeing. Thomas served his mission in Anaheim and he is looking forward to seeing some old friends and the places he served. It is hard to leave the girls, but we know they will be in good hands as we are gone. We plan to enjoy this time together and relax!

Rachel continues to take steps forward toward her progression in coming home. She had her last dose of antibiotics last night, finally got that darn IV out of her. She has had the IV now a total of ten days. They had to put several in because she kept knocking them out. It took them several attempts each time they had to put a new IV in. I am sure if she could talk she would say I am happy that IV is out for good. Rachel continues to gain weight as well, she is now 9lbs 14.6oz. She is becoming such a big girl. She also had the amount of oxygen that she needed reduced to 1/8 of a liter, but she was starting to breathe a little heavy so they put her back to 1/4 of a liter. We are so thankful that she is moving in the right direction. She is such a little princess. We just love and adore her more than words can express.

Our little Haley is also pushing forward in her progression towards returning home. We were worried about her weight, because she had dropped almost everyday she has been back in the hospital until last night. We know they didn't feed her for a little while due to her belly being distended. They wanted to make sure that she would be ok before they started her feeds again. They have started them and are trying to get her back to what she was on when she was home. They are not rushing her because they are being cautious. She is at full feeds now, but over an hour and a half. They will get her back to full feeds over an hour probably today or tomorrow. The doctors discovered that Haley had a blood clot in her left arm from her last PICC line she had. It appeared to be resolving itself, but they didn't want to take any chances so now she will have to take Lovenox (a blood thinner)by injection twice a day for three months. We aren't looking forward to giving her shots twice a day, but we will do what is best for her. Haley seems so much happier since she was put on oxygen and on other meds that have helped her be more comfortable. She seems so much more active since she has been back at Texas Children's Hospital. We are so grateful that Haley is doing much better and seems to be happier. We absolutely love her and can't wait to see her back home in her own bed.

As always we continue to thank the Lord for the beautiful miracles (Rachel and Haley) in our lives. They have changed our lives for good and have taught us many lessons in life. Lessons we needed to learn! Rachel and Haley have us wrapped around their little fingers. They are just so adorable! We would do anything for them. Can you tell we love them very much? Oh yes we do!

Cute Pictures

We take so many pictures of the girls when we see them that I thought I would post some of the recent cute ones. The girls are doing well with nothing really new going on. They both had a good day.

Haley





Haley has discovered her fingers and has been putting them in her mouth





Rachel looking at her finger





Rachel sticking out her tongue

Continuing to Endure

Rachel and Haley continue to progress, endure and do as well as they can in the hospital. They both are such beautiful little girls. We adore both more than anything in this world.

Haley is now on day six this time around in the hospital. She is doing much better than she was when she was admitted. They have been able to control her pulmonary hypertension with oxygen and sildenafil(viagra). The sildenafil helps reduce the pressure on the pulmonary artery that goes to the heart. Thomas and I were visiting with her last night and noticed a rash on her face and eyelids and on the trunk of her body. We thought maybe she was allergic to one of the medications she was started on, but this afternoon when we visited her it was gone. We still would like to know what caused her belly to become distended. So far they have no cause for it. We hope that they figure it out soon, so that this doesn't happen again. We hope Haley will be back home with us soon.

Haley laying in her hospital crib



Rachel continues to thrive since her surgery a few weeks ago. She is such an alert little girl. She seems to have her nights and days straight. They tell us she has been sleeping through the night. Now she just needs to teach her sister that. Rachel's staph infection is looking a hundred times better than it did. The antibiotics have been going for six days. She has another 4 days to go. The antibiotics seem to be working. She is still trying to master the whole bottle feeding thing. She is not doing the greatest with it, but that is ok OT will continue to work with her. We are hoping to have Rachel home with us within a month or less. We can't wait to have both girls home with us. I look forward to getting a picture of both girls together at home. Home is not the same without them both. We love and cherish them so very much.

Rachel blowing bubbles

Happy 6 months!

Rachel and Haley are 6 months old. Wow how time has flown by. Unfortunately they both had to spend their half year birthday in the NICU. Haley is doing well. Her feeds are being increased while the IV fluids are being decreased. She's tolerating the increase in the continuous feeds without any problems with her belly getting distended. Her feeds will be transitioned back to the feeding schedule she was on at home, but we still don't have an answer of why her belly got distended. The results from the barium enema today were normal. The doctor said that if things continue to go well with Haley she may be able to come home sometime next week. We hope that will be true. It's been hard having her back in the hospital after we have had her at home. One of Haley's doctors did say that this won't be the last time she will be in the hospital. Since she was so premature, she is at risk for many illnesses and is so susceptible. We hope that she won't have to spend too many more days of her life in the hospital. As she grows, get bigger and time passes she will develop a stronger immune system. Haley now weighs 9 pounds.

Haley with her cute little glasses



Haley with her pacifier falling out



Rachel continues on and doing well. Rachel weighs 9 pounds 6oz. Rachel is also getting transitioned to a "going home" feeding schedule and has been tolerating that transition well. Rachel has been taking the bottle, but is not taking much. She took only 10cc's today. Haley was only taking about that much at home as well. Its going to be a long road for the girls on learning how to bottle feed. With the help of OT and practice they will get there.

Rachel holding her pacifier in



Rachel making a funny face!

Improvement and healing

It has been a very busy last few days for the girls, especially little Haley. Haley has been back in the hospital for a few days now, and could be there another week or even longer. She is doing much better since they put her on Oxygen and a diuretic to get the extra fluid off. Haley is back to her true weight (8 pounds 11oz). Haley has had several specialists (pulomonologist, cardiologist, and gastrointerologist) looking at her to figure out what is going on. They have diagnosed her with pulmonary hypertension thus far. The right side of the heart was a little enlarged due to the pulmonary hypertension. The doctor did get that under control with medication and supplemental oxygen so they say her heart will be ok. The lungs will take time to heal. The gastrointerologist looked at her today to figure out what is going on with her belly. Her belly is looking much better than it did when she was at home. They still are trying to figure out why it got distended. They ordered a test called a barium enema to see if there are any strictures. She was started back on feeds, but at a slow rate to be safe. Yes poor little Haley has been through the ringer lately. We hope and pray they can figure out what is going on with her, and get her back home soon. We miss her very much at home, she brought so much joy to us when she was here with us. We cherished the week or so we had at home with her, and look forward to having her back.

Haley so tired after a long day in the NICU



Rachel continues to improve and is doing really well. It has been confirmed that Rachel did in fact have a staph infection around her surgical site. They confirmed it through skin cultures. Originally they suspected it but weren't 100% sure, but now they are. The good news is that the staph does not appear to have gotten into her blood. We are so thankful for that. Rachel is getting antibiotics to kill the infection. She is now starting to learning to eat from a bottle. Occupational therapist are working with her on that. Rachel's feeds are being transitioned to intermittent/bolus feeds instead of continuous. She is doing well with that transition thus far. She continues to grow and now weighs 9 pounds. We are hoping that once her g-tube is changed out to the g-button, she will be able to come home. That should happen within the next two to three weeks. Rachel is such a little princess, we adore her and can't wait to have her home as well.

Rachel loving her tummy time

Update - New challenges

Well it has been hectic the past couple of days for both girls. Haley was admitted to the hospital late last night. We took her to the pediatrician after we noticed that her abdomen was looking distended and her lips would turn blue/purple whenever she cried. She just wasn't looking good. The pediatrician told us to take her to the ER at Texas Children's Hospital. In the ER, she was placed on oxygen as her oxygen saturation's were in the high 70's. Oxygen sats should be in the 90's-100%. Haley also gained 1 pound in 1 week which is not good. She was obviously retaining some fluid. She was admitted to NICU level 2 for tests and to figure out what is going on. We hope to get more of an answer today. We will keep everyone updated as we get further details.
Rachel is also having a problem. It was found that her incision site from her fundo/g-tube are infected with Staph. The doctor did blood cultures and so far her blood is infection free. We are so happy about that. It's just her skin around her g-tube and incision that is infected. She is on antibiotics and doing well otherwise.
We appreciate very much all the prayers on our girls behalf. We are so grateful for everyone and all the positive comments. We continue to pray and rely on the Lord to help Rachel and Haley get through this challenging time and we continue to be grateful for all of our blessings. We love our girls!