10-24-11 Today Mylah went to visit Dr. Ciccolo for Post-Op follow up. His partner Dr. Weinseck did her surgery, but he will do her full heart repair, so we met with him for this check up.
It's always nice to see him, he is friendly and we like him. He said that Mylah's incision looks great and that he is pleased with how well she is recovering from her surgery. He answered all of my questions and then set a date to see her back in 4 weeks.
10-26-11 Today Mylah saw a Pediatric Urologist - Dr. Hwang. We really like him. We have known him for five years because he is our oldest child's Urologist. Dallin had Hydronephrosis of his kidneys when he was born. Two surgeries later he is doing really well and we are grateful to Dr. Hwang and his team for being so wonderful. We have always been really impressed with him. We are now visiting him because Mylah was diagnosed with Grade 2 Hydronephrosis. She will have another Renal Ultrasound and a VCUG (dye scan) done next week and we will go back to see him and see if it has worsened or not. We are praying all will be well.
10-27-11 Today Mylah had a check up with the Pediatrician. I am getting used to doing this - going to the doctor three times a week - thing. She weighs 9lbs. and is 21 inches long. When the nurse weighed her I had her check again because I didn't believe her...9lbs? Wasn't she just 7lbs and tiny a week and a half ago? She has gained 22 ounces in 10 days! I asked Dr. Tenby about that, and he said he isn't concerned. It is a big/fast weight gain, but as long as it isn't fluid build up, which he couldn't see, so there is really no concern. He will just watch her and make sure she doesn't gain too much weight too fast. Overall she is looking really good and he is pleased with her progress. She will go in next week for her second Hep. B shot.
After a week of appointments, I just feel so blessed. Mylah has been progressing remarkably well and everyone is impressed with her. She amazes us daily and we are so blessed to have her special spirit in our home.
We have had such wonderful support from our immediate family lately. They have been great to stop by and visit, bring us meals, spend time with us, and show their love for Mylah.
Yesterday Neil's Mom and two older sisters, Lindsay and Meredith, stopped by for the afternoon. It was really nice to visit with them and let our kids play.
When they arrived they walked in the door holding this:
It's the most adorable gift wreath I have ever seen!
Meredith received one when her baby boy was born in September. I saw it and mentioned how much I loved it and what a good gift idea it was! She must have remembered and helped her Mom make one. It was from all of Neil's siblings and their families.
Our four year old niece, Afton, picked out the doll in the middle. She liked it because it had a heart on it. She is so sweet and very aware of the situation and loves to pray for Mylah and her heart.
The rest of the wreath is covered with clothes, shoes, diapers, baby necessities, and toys. We love it and are so grateful for this thoughtful gift. I love it so much, that I am going to have a really hard time taking it apart! I may wait a few more days and keep looking at it. It truly was a thoughtful gift. One way in particular, is that if you look closely, most of the clothes and accessories have hearts on them. So significant, so meaningful.
Thank you Margaret Ann and Steve, Monica, Kyle, Wade, Meredith, Lindsay, and your families, for the sweet gift, Mylah loves it!
Mylah had her first Pediatrician appointment today. She did really well! The Dr. was informed of all of her heart problems and her surgery. He was impressed that she came home 6 days after her surgery. She is definitely our little miracle baby! She weighs 7lbs. 10 oz. and is 20 inches long. Almost back up to birth weight! The Dr. refferred her to a Urologist to have her kidneys checked out. She goes there next week. We are hoping all is well with them and that the Grade 2 Hydronephrosis was only because she was a newborn and pumped full of fluids at the hospital. He also started her on Amoxicillen to keep her from getting any type of infection. She was originally on Cephelexan, but it made her vomit, so he switched her. Overall she looks amazing and goes back in a week for another check up!
Mylah had her follow up/post-op Cardiologist appointment on Tuesday. She had a quick visit by one of our favorite and the most dedicated Cardiologist's we had, Dr. Gallindo. He was the one who stayed by her side the entire day after she had her Tet Spell. He was very concerned about her and became attached quickly. He stopped by to check on our "Princess" as he calls her and I was grateful. It was really nice to see him. Next her Cardiologist - Dr. Thomas took a look at her heart. He says everything looks really good! Her O2 Sats are at 83% and she is progressing well. Best case scenario for her is to be able to make it to 6 months old or older and then have her full repair done. Unless something happens before then, that is the plan. Dr. Thomas will see her again in a month.
That night as I went to bed, I realized how truly blessed we are as a family. Everyday I get to hold my precious baby girl. I get to nurse her and give her kisses and care for her. Some parents with CHD Babies or Tet Babies aren't as lucky. We are some of the lucky ones. Mylah has done really well at home and is growing and sharing her sweet spirit with our family. We all love her so much and can't imagine our days without her!
Mylah had her first bath today. It was pretty much the first bath she has ever had. At the hospital they wiped her down, but didn't clean her very well.
She was not very happy with me for stripping her down to her diaper and leaving her out in the cold. But on a better note, her incision looks way better these days! She kinda looks ginormous here, but she really is petite. As soon as the washing began, she screamed her head off!
I quickly wrapped her in a towel and all was well.
Mylah was discharged today around 2 p.m. to come home! I stayed the night last night to be sure she was nursing good enough to come home. She did so well and kept her O2 Sats and Vitals right where they should be!
I dressed her in her going home outfit,
We said goodbye to our favorite nurse - Laura - she's the one that reminds us of Neil's sister Meredith. We LOVED her and hope the next time we have to be at the hospital she is our nurse.As soon as I came home we cleaned Dallin's hands and let him say hi to his sister. He was so happy she was home and couldn't stop giving her kisses. Rylee woke up from her nap shortly after and was able to see her sister. She kept saying, "Ahh...Baby." I am not sure she realizes it's her sister. But she didn't want to leave her alone! I was feeding her and she kept asking to hold her. We are going to have to watch Rylee really closely!
We are so grateful that Mylah was able to come home so soon. She had her surgery only 6 days ago and progressed extremely well! Thank you for your continued prayers, thoughts and love. We appreciate everyone's support and constant concern. We are so blessed to finally have our precious Mylah home with us!
10/9/11 Mylah met two new goals today! She had her chest tube taken out. It was draining any fluid that remained around her heart. They say it is the most painful part post-surgery and having it removed is a relief! They said she did really well and they were sure to give her Morphine before hand.
Mylah also had her nasal cannula removed. She is now breathing without help from oxygen! Isn't she beautiful without all of those tubes?! Our sweet nurse Laura text me and let me know that we could now bring clothes for Mylah to wear because all of her tubes were removed! I didn't look at the size of the onsie I had brought and realized it was a 3 to 6 month one. We laughed because it drowned her, but she wore it anyway. We bundled her up and she sat there wide awake enjoying time with Mommy and Daddy!
Later I tried to breast feed her and she didn't seem interested. She doesn't really like bottles either so we think she was just tired. But Daddy was finally able to get her to eat. She was set at the limit of 65 mL's each feeding. That is a little over 2 ounces and she loved it!
We are overwhelmed with the blessings we have received. Mylah has progressed swiftly and better than any of the doctors predicted. She is our little fighter and one amazing baby girl. We are hoping to bring her home soon, but again it is all up to our sweet princess. She decides when she is ready. We pray it is soon! Thank you all again for reading her blog, praying for her, and for supporting our family. Prayers are answered and we are blessed.
To celebrate, she progressed nicely through a few major goals. She started taking breast milk from a bottle! She did really well with her first few feedings and drank 30mL's and kept it down. She liked Daddy feeding her better than Mommy, maybe because Mommy shouldn't be giving her a bottle? We are so proud of her and glad she still had her sucking and eating reflex. The doctors say it is common for babies that have heart surgery to take a long time to eat again, and this sets them back from going home. We are so glad she remembered how to eat.
Mylah's next goal was to be weaned off of such a high flow of oxygen. By the afternoon they had weaned her down to 21% flow, which is equivalent to the room air you and I breathe. She kept her O2 Sats high and was breathing really well.
One procedure they did have to do to her was CPT (Chest Physical Therapy). They had done a chest x-ray and found that one of her right lung lobes was a little congested. Sometimes after surgeries like this, babies will get a little mucus plug in their lung, and it causes build up and a little hoarse sound in breathing. During CPT they beat on her poor little chest to try and break things loose. It's sad to watch, doesn't hurt her, but it makes her cry. This is a good thing, and eventually helps to break up that mucus. She did really well the two times we were there when she had it done. She is such a strong little girl.
Lastly, little Mylah is taking a really low dose of pain medicine. They give her Tylenol and Morphine periodically. Overall, she is handling the pain really well. She is also on Aspirin to keep blood clots from forming, and Keflex (sp), an antibiotic, to keep her kidneys from getting any infections.
Our precious girl is progressing so well and we are happy that she is fighting to come home soon! Thank you again for all of your prayers, thoughts, and well wishes. Without your support we couldn't get through this. We really have the best friends and family ever! Thank you!
We arrived at the PICU Friday morning to our baby girl that was wide awake! So we immediately started taking pictures. We were pleased to see that her breathing tube had been removed (extubated), and that she was taking in air on her own. She was on a Nasal Cannula to supplement her oxygen levels. We both immediately remarked how much better she was looking from the previous night. Swelling had gone way down. Doesn't she look beautiful!
Mommy wanted to give her some identification, and was tired of people calling her a boy, so we glued a little bow in her hair.
Mommy and Daddy have no doubt that she knows who we are, she knows our voices and is comforted when she hears us talking to her. She responds to us like she has known us forever! She probably has!
She looks us right in the eyes as if to ask us, "Mommy, Daddy, am I going to be okay?"
Grandma Cox, and Brother and Sister came to visit. Rylee was so curious and wanted to touch her soft head of hair.
Brother is proud of his little Sis. He knows, and remembers what it was like to have everything hooked up to him (kidney surgery's). He sympathizes with her, and knows the pain she feels. He is happy to see her doing better each day.
Mommy got to hold her for the first time after surgery!
She was "going to town" on her binkie, and loved it even more when we dipped it in some "sweet juice" that made it so yummy for her.
Mommy has her red and blue (Congenital Heart Defect awareness colors) watch band on.
Daddy got to hold her next.
She fell asleep in his arms. Her binkie, and Daddys arms make her feel so safe and warm.
Our favorite Nurse Laura took this picture for us. She reminds us of Neil's sister Meredith. Looks just like her. We both comment on how it feels like we have just spent the day with Meredith when she is there giving care to Mylah. Another tender mercy.
Neil's family came to visit in the afternoon. His oldest brother Kyle, sister-in-law Gerilyn, and their youngest daughter Bella. His brother Wade, sister-in-law Jessica, and their youngest daughter Hannah. Bella and Hannah were the first cousins to see her. We enjoyed their visit.
This is Hannah, Wade and Jessica's youngest daughter. Mylah's cousin.
Mylah eating from a bottle for the first time Friday night at about 9:30. She drank 10 ml. of Pedialite. She tolerated this first bottle, so if the next two went well, the nurses were going to graduate her to Lara's breast milk from a bottle. Yay!
She actually ate better for Daddy. We have another "Daddy's Girl" on our hands.
After 2 days of no food, nothing tasted so good. A look of satisfaction, and it's only pedialite.
After we took this picture, we tucked her in, and kissed her goodnight as she fell asleep. Mommy and Daddy went home to rejuvenate and rest too. There is nothing more important than being there at the hospital to support her. We know Dallin and Rylee are aware of what is going on, and we are trying our best to give equal attention to them and their needs as well. We thank all of you from the bottom of our hearts for being willing, and rendering services here and there, and for kind words, and prayers for our family. It is hard to be in all of the places we feel like we should be right now, but family and friends have surely made it a tolerable task. We love you, and can't thank you enough. We could not bear this on our own. We acknowledge divine help as well. The Lord has "been on [our] right hand and on [our] left, and [His] Spirit has been in our hearts, and [His] angels round about [us], to bear [us] up" (D&C 84:88). We have not been alone!
10-06-2011 Mylah had a really good night after her surgery. Her vitals and sats stayed constant. She rested and was given antibiotics and lasiks (which cause her to pee) to take down her swelling.
Neil and I brought the kids to the hospital with us. We were lucky because our nurse was kind enough to let both Rylee and Dallin back to see her. It was Rylee's first time seeing her baby sister. She probably didn't believe us that she was a "big sister" because she had never seen Mylah yet. Just pictures.
She loved being able to touch her and she kept saying, "Ahhh, Mylah." It was so cute. She just loved her and kept touching her head.
Dallin loved seeing Mylah again too, and was glad he could do it without a mask and gown on. He was able to go into the NICU, but they made him wear special coverings to keep her healthy. It was a little easier and not as scary for him to see her without all that on.
Mylah continued to do well throughout the afternoon. She is a fighter. At 10:00 a.m. they took her off pain medication to allow her body to process all of the drugs and medicines. They want her to be able to wake up enough to have her breathing tube removed (extubated). She worked really hard to wake up and did well with pain management. They gave her 6 doses of regular Tylenol which helped manage whatever pain she might feel. The Dr. told us that her pain would be minimal, due to very few nerves in her chest. We pray that she continues to do well with pain management.
Later in the night, Mommy and Daddy were talking to Mylah and she opened her eyes! We were so happy and it made Mommy cry. She knows when we are there, she knows that we want her to fight and get better soon so she can start breathing on her own. They tested her a few times and set her ventilator to about 16 breaths per minute and she was breathing over it at 19 to 20 bpm's. This meant that she was working to breath on her own. But to be cautious they left her on it until she wakes up more.
She is doing so well and we feel so blessed. Our Heavenly Father hears and answers our prayers and we thank each of you for continuing to pray for Mylah. We are aware of the love and support from each of you and can't thank you enough for your thoughts and concerns. We will update here with any changes.
We both feel like Facebook is not an appropriate platform for posting about Mylah's progress, so
we will only post updates about Mylah here on her blog. That was our original intent, so we will stick with that plan.
We are going to begin with an abridged timeline of the events over the past few days. We hope this keeps you informed.
Saturday - 10/1/11 Mylah's Birthday!She was born healthy, natural delivery, and was pink all over. She was immediately assesed by the NICU team and after a kiss and love from Mommy, she was taken to the NICU while Daddy followed. She did really well and kept her oxygen saturation high.
Sunday - 10/2/11 Mylah continued to do well. She stayed pink, and in Tet-Baby lingo, that is a good thing. She had her Echocardiogram done and the Cardiologist was please with what he saw. Mylah indeed had Tetralogy of Fallot, but her Pulmonary Artery looked nice and open. They were happy to see her doing so well and finally let Mommy nurse her! She did really well and kept all her vitals and sats where they were supposed to be.
That afternoon the Neonatologist - Dr. Ramsey, came and talked to us about Mylah's kidneys. They had a small amount of Hydronephrosis about a grade 2. They were going to watch it and start her on antibiotics to keep them from getting infected, and to keep it from going to her heart.
She did well throughout the night and nursed really well.Monday - 10/3/11 Mylah continued to eat really well and keep her vitals and oxygen saturation high. By 1:00 p.m. the Neonatologist was really impressed with Mylah' progress. She was satisfied with how well her blood was saturating and with her nursing. She decided to take her IV fluids to down to half the dosage and watch her blood sugar levels. If those stayed up she was on track for discharge to go home. She also needed the go-ahead from the Cardiologist and to pass the car seat challenge and she would be ready to go!They watched her for the rest of the day and she was remarkable! I got to stay one more night with her in what they called a Home Room. It gave me the chance to feed her and spend the night with her. We were hoping all would go as planned and that she would come home!
Tuesday - 10/4/11 Tuesday morning Mylah had done really well all night. Her Sats and Vitals stayed constant. She passed her car seat challenge and nursed well all night. The Neonatologist wanted her back down in the NICU to observe and check her before they dis-charged her. The Neonatologist was confident that she be released to go home within the hour. The Cardiologist came and did another quick Echo of her heart, things looked good to her. Next was her hearing test. She was an hour behind on her feeding and screamed the whole time but finally passed. The final item was her RSV immunization. Because she is a CHD baby, they wanted to make sure she had a defense against RSV while at home. The nurse then removed her IV and was getting ready to write down her vitals and sats, and Mylah's saturation shot way down. She had a reaction to the RSV shot and her heart couldn't handle it. They eventually determined that she couldn't go home because her sats were too low. Also, the pressure gradient at the pulmonary out-flow went from 25 (good) to 60 (bad) They kept her overnight to observe her.
Wednesday - 10/5/11
I went in at 8:30 a.m. to feed Mylah for the morning. She was saturating well and ate well. After her feeding the Cardiologist came to do another Echo on her heart. While doing the Echo he determined that her Pulmonary Artery was looking more restricted. Her outflow wasn't what he wanted it to be and unfortunately that meant that she wouldn't be going home. The Neonatologist talked to me and said they would be putting in a PIC line - larger IV- to start what is called Prosteglandins. They hoped it would re-open what is called a ductus in her heart, so they could place a stent in it, to allow better perfusion to her lungs and body. They poked numerous times and never got her PIC line in. They decided to put two lines through her belly button. Those were successful.They pushed the Prosteglandins and she took a downward spiral from that point on. Follow intubation, and after being placed on two different types of ventilators, they administer numerous drugs that she never responded to. Her color was very poor, and we were quite nervous for her. The Cardiologist on call performed outstandingly, and never left her side. He lead the NICU team with amazing authority and expertise. After what seemed like an endless waiting period of monitoring and preparing and calling in surgeons, Mylah was given a blood transfusion, and they rushed her in for open-heart surgery. Her surgery began at 8:30 p.m. She was given a BT shunt...a procedure where they tie into her aorta, and shunt, or supplement blood to her pulmonary artery...thus supplying her lungs with sufficient blood to be oxygenated and carried throughout the rest of her body. She was in surgery for about two hours ending around 10:30 p.m. The surgeon walked with us up to the PICU, and explained how well she responded to the surgery, and mentioned how he felt that "there are a lot of people watching out for your little girl", and acknowledged the miracles that took place before and during her surgery. He remarked how she "was born at the right time", where modern medicine has made significant progress, and there are so many advances in the technology available to them. He mentioned how the human body is so amazing, and adapts around the procedures that they can perform. We made sure he knew how grateful we were for him, and the rest of the surgical team.
We spent a few minutes with Neil's parents visiting her in the PICU, where she will recover for a minimum of 1 week. Regardless, she will determine how long she will be in the PICU. We will be here to support her all along the way. We thank all of you from the bottom of our hearts, for the many prayers, and unfailing support for our little heart baby.