Ashlyn Elizabeth Chaney

Cardiologist appt 5/15/09 & update

2009-05-19T12:41:00.001-07:00

Ashlyn had her three month cardiologist appointment last Friday (yea three month appointments instead of monthly!). She now weighs 18 lbs. 5 oz. and is 28.5 inches long. So she gained about a pound and a half and grew an inch and a half if almost two months. There is still a residual hole around her VSD patch and mild pulmonary narrowing. Dr. Huhta wants to see her back in three months. She was 8 months old yesterday.

Developmentally she is doing great. She has two teeth coming in. The first cut Mother's Day weekend and the second last weekend. We finally got eating solids down and started finger foods. Then she decided (just like big sister Brooke at the age) that she only wanted table food and refuses baby food. She eats pretty much anything we give her.

Ashlyn started sitting up unassisted end of March. She is on her way to crawling. This last week she has been reaching for things while sitting and is able to get back upright. If she topples over and lands on her knees, she will rock a bit on her hands and knees. She also is reaching up to things near her, so she should be pulling up soon. These are all good signs that being on the heart lung bypass machine did not do her harm.

We passed the six month mark from surgery April 27th. It’s hard to believe it has been six months and at the same time it is still so fresh in out minds. Ashlyn is doing incredibly well and we are very thankful! It could have been so much worse.

We did have an eventful week last month. Brooke broke her arm falling off the bunk bed and two days later Saphyre ran into another girl at Girl Scouts and needed stitches above her eye. Both girls are doing great now and Brooke will have her cast on for only a couple more weeks.

Pediatrician Appt. 3/19/09

2009-03-27T15:49:00.001-07:00

Ashlyn is six months! It went so quick. At her appointment she was 16lbs. 15.6 ounces and 27 inches. She is in the 70th percentile for height and weight. Which is great considering what she went through. She sure loves her bottle! We are struggling with eating solid foods. Sometimes she eats okay, sometimes she spits it right out. We keep trying :)

The last few day, Ashlyn has been sitting very well. She is finally able to hold her weight up and not bend at the waist so much. Today she was playing with a driving toy while sitting and loved it! She also loves her jumperoo and jumps like crazy! We also got her ear pierced and she did very good.

Other than that, everything looked great and she seems right on track developmentally. She is definitely a happy healthy baby!

Cardiologist appointment 2/20/09

2009-03-02T21:46:00.000-08:00

On Wednesday February 18, Ashlyn weighed 15 lbs. 10 oz at the pediatrician (for RSV vaccine). On Friday February 20th, she weight 15 lbs. 15 oz.! She is gaining quick. She is also 27 inches long, and pretty soon will outweigh Brooke at the same age, if not Brooke at three! I am so happy she is gaining so well though, considering everything. We are working on baby food, she pretty much spits it out and laughs, but hopefully soon she will get the hang of it.

Everything looked good at the cardiologist. She still has a hole, but they will continue to monitor it. Dr. Huhta released her to go to day care, said to come back in three months and to treat her like a normal baby! I want to get her ears pierced but I am nervous and not sure if she needs to be on antibiotics or not, so we will wait. We also decided that the best thing for our family was for me to continue to stay home with the girls. John and I have have been on the fence about this for months, but finally decided this is what we need to do. Brooke will be starting school soon enough and then it will be more affordable.

Ashlyn has starting rolling over, babbling and giggling. The giggles for Brooke are huge, belly giggles, but the giggles foe everyone else are small. She thinks Brooke is the greatest thing ever! She thinks Mommy is pretty special too. I catch her staring at me often and when I look at her she grins so big and wiggles like crazy. It's hard to believe such a short time ago, she was int he hospital. We are over four months out from surgery, and Ashlyn will be six months old in a few weeks. We also were in the newspaper for CHD Awareness week. I will post the article in a different post. Hope everyone is well. Here are some recent pictures:

Pediatrician Appointment 1/19/09 and update

2009-01-23T08:05:00.000-08:00

We actually had two visits in the last week. i took Ashlyn because she has been coughing a lot and we were starting to get concerned. The ARNP said she has a cold and maybe a touch of RSV. The only way to test for RSV is in the ER and they give babies breathing treatments that Ashlyn can't have because of her heart. So if it didn't improve, she wanted to do a chest x-ray and go from there.

The cough is better and she isn't as congested. She had her four month immunizations. She weighed in at 14 lbs. 1 oz. and is 24 3/4 inches long. Brooke at this age was 14 lbs. 10 oz. so she really is growing well considering all she has gone through and not eating at all after surgery. She is now eating 6 ounces every 2-4 hours and we have tried cereal. She is not into it, but last night I tried applesauce and she loved it :)

Ashlyn is playing with toys a lot more and reaching for things. She also within the last few days has been pushing up higher on her arms during tummy time. She kicks her legs and ends up scooting herself around a bit. My favorite thing she does is when I hold her she lays her little hand on my shoulder, it so cute!

Other than that, we are all doing okay. Everyone but me has been sick with coughs and fevers, and Ashlyn didn't get the fever part either. It has been cold her the last few days, big difference from wearing shorts and tanks just a few days ago!

Cardiologist Appt, 1/9/09

2009-01-10T17:11:00.001-08:00

Chunky butt is up to 13lbs. 14 oz. and in the 70th percentile!!! Her heart is looking good, still a small hole but doesn't seem to be getting larger. She is still off meds but he may put her on lasix next month. She is breathing abdominal breathing when she gets upset and we also think she has a little cold. She had been coughing a lot, so he wants to look at her when she gets over it to see is she needs to go on lasix (diuretic). He also wants to keep her home still, to avoid extra exposure to germs. She has been home for two months already! Surgery was over 2 1/2 month ago too. It has gone quick.

Ashlyn is super alert now and tries to pull herself up to a sitting position when propped up. Still hating tummy time, but holds her head up well when we do it and likes inverted tummy time. She is also grabbing at things and starting to play with toys.We had a few real rough days last week with the coughing and fussiness. She wanted Mommy to hold her a lot. She is trying to laugh too. She will be four months old on the 18th. Here are some recent pictures:

Christmas pictures

2008-12-27T06:40:00.000-08:00

The girls had a great Christmas. Ashlyn loved the lights! Here are some pictures:

Three month old on 12/18

2008-12-21T18:11:00.000-08:00

Wow! Three months have passed since Ashlyn's birth, and it's been a crazy three months! Ashlyn is doing great. We got the approval for her RSV vaccination, and we went on Thursday for it. She is weighs 12 lbs. 4.9 oz now, so still gaining great! Ashlyn is eating 4 ounces every two hours still, but as of last week she is sleeping 11-12 hours straight at night!!! Mommy loves that. She also has found her hands and feet and stares at them moving, it's so cute. Bath time is a nightmare, she hates it! But hopefully in time she will love it. Such a smiley girl now too and very talkative. Developmentally she is right on track, holding her head awesome and very alert, which is good because I was concerned with the low oxygen saturation she may be delayed or develop cerebral palsy but so far so good :) We go to the cardiologist and pediatrician next month and I will update about those appointments (1/9 and 1/18) and add some Christmas pictures. Last week Ashlyn got to meet her Uncle Tim and Aunt Karen from Connecticut, which was a huge, but great surprise! Brooke and Saphyre loved the visit too, but it was too short :( Happy holidays to everyone and also a big thank you to everyone for their help, love, prayers and thoughts for Ashlyn and our family. We appreciate everything! Merry Christmas!!!

One month after discharge

2008-12-08T08:08:00.001-08:00

Yesterday was one month since Ashlyn was discharged. She is doing very well. We don't go back for a check up until next month, but I am sure she is gaining weight. She is now up to 4 ounces every two hours, sometimes a bit longer or more milk. She loves to eat! She is also sleeping longer at night, about two six hour stretches, and then three hours. So Mommy is getting a bit more sleep now! She is also getting really playful and loves her play mat. Here are some recent pictures of her and of Thanksgiving. Thanksgiving was her first holiday that was not in a hospital.

Thanksgiving:

11/26/08 Cardiologist appointment

2008-11-26T17:43:00.000-08:00

Ashlyn had a cardiologist appointment today. He O2 saturation was 98%, which is great! Dr. Huhta also took her off the Enalipril, which means she is not on any meds! She weighed in at 10lbs. 14 oz. and last Tuesday she was 10 lbs. 1 oz. so she is gaining weight great. She should be for eating 4 ounces most of the time every two hours! She had an Echo and an EKG and it looked good. She still has a leak around the VSD patch, but that should closeup on it's own in time. All in all he said she looks great and healthy. Now we are in the process of getting her insurance to approve the Synergist vaccine for RSV. They don't like to pay for it, seeing it is $200 a shot, but in her weakened condition it would be very dangerous for her to get RSV. So hoping that goes through for her. Her next appointment is not until January 9. Next Wednesday we will be going to our first Mended Little Hearts meeting which is a support group for families of children with congenital heart defects. I am looking forward to it! Everyone else is doing great. I am still home with the girls, Ashlyn isn't ready for day care yet. Saphyre joined Girl Scouts this week, which will be very good for her. Brooke is getting bigger and smarter each day, and is a great help to Mommy, but can be a sassy brat when she wants too! We wish everyone a very Happy Thanksgiving, this year we have a lot to be thankful for!

Two months old and doing great!

2008-11-22T21:46:00.000-08:00

Ashlyn continues to do great each day. She is gaining weight great! At discharge (11/7), she was 8lbs. 8 oz. At her cardiologist appointment (11/12) she was 9 lbs. 7 oz. and at her well baby check (11/18) she was 10 lbs. 1 oz.!

The cardiologist appointment on 11/12 went well. She had a chest x-ray, EKG, and Echo done. There is till a residual leak, but only one now, that they are monitoring. We go back on 11/26 for a check-up.

Ashlyn is two months old now! We had her well baby check on 11/18 and everything looks good. She had her immunizations and we also talked about the Synergist (RSV vaccination). They said they have trouble getting it there because it is a $200 vaccine so hopefully she can get it at the cardiologist. They need it every month during RSV season. Dr. Rodriguez also hooked her up to the pulseOx and she was running 98/99 for oxygen saturation! Way up from 80-84 pre-surgery.

She is so smiley now and coos and "talks" with us often. She has changed so much already and loves attention. If I don't look at her when she is eating. she will make little noises to get my attention. She also has started to find her fingers and chew on them.

Ashlyn is eating a lot now. The last few days it has been 3 ounces every two hours sometimes three hours. But she has been sleeping great through the night, 6-7 hours. So I would much rather feed her every two hours than get up twice a night! Her scar is healing nicely as you can see below.

11/7/18 Day 11 DISCHARGE DAY!!!!

2008-11-07T21:35:00.000-08:00

Yes, you read that right, Ashlyn was discharged today! VSUC test was negative, bacteria and urine cultures negative so she is home. I will post more tomorrow, I had my tubal done earlier and I am pretty sore. Thanks for all yout thoughts and prayers, my baby girl is sleeping peacefully in her own bed!!!

11/6/08 Day 10

2008-11-06T19:25:00.000-08:00

Ashlyn's blood and urine cultures are still negative, but not final yet, yay! So she may be discharged tomorrow. She had a good night and day, ate well. her night nurse said she has wanted to be held a lot. I think she is just so done being there and wants the attention she had when Mommy was there and from all of us at home. She is probably so confused. If she is discharged tomorrow, we will have to get her late because I am finally getting my tubal done. no more babies for us! This was definitely the icing on the cake, never in a million years would I have thought we would go through this and I NEVER want to do it again. Ashlyn also has the VSUG test tomorrow where they shoot dye in her kidneys to make sure everything is okay. So fingers crossed tomorrow is the day and that the cultures are negative. Will Day 11 (Mommy's favorite number) be discharge day???

11/5/08 Day 9

2008-11-05T12:05:00.000-08:00

Ashlyn isn't coming home today :( She has a UTI, and they did another urine culture today. She did seem off last night and I think this is why. But today she is still eating well, and at 3 ounces or a little more each feed. There were not any issues with the Echo and halter EKG when they discussed her in rounds this morning. I am happy she is still there to get all her issues resolved before she comes home. I don't want to have to go back to the hospital again. It was very sad to leave her today, considering I have been there since surgery and we have had her home for three weeks. It's hard being home without my baby, but I know this is best. I am attempting to upload pictures but the camera is not cooperating. i will also update eat post with the pictures I took each day now that I can download them. I will be heading back up to see her tomorrow and bring her milk, and she will be discharged probably Friday or Saturday as long as everything goes okay.

11/4/08 Day 8

2008-11-04T11:00:00.000-08:00

The biggest news today is that Ashlyn may come home tomorrow. Everything is looking pretty good, she is eating well. The blood culture has come back negative so far, so whatever bacterial growth she had is more than likely gone from the antibiotics. They took her off the second antibiotic today. She will go home on a med called elapril which helps her heart work better. She will go back a week after discharge to the cardiologist. No news on the Echo today or the 24 hour halter EKG. She ate for times in the night last night, which is really considering that spanned 8 hours. Tonight she seemed a bit off. She took a long time to drink her 9:00 feeding, and she wasn't interacting with me as much. They gave her Tylenol right before that feeding because she was cranky. She may just not be feeling well, she had a small fever. We gave her a bath and dressed the top of her incision. It had become red and irritated from her chin and pacifier resting on it, so they ordered her a cream to put on it. I have mixed feelings about her going home tomorrow. I am leaving tomorrow anyway, and part of me wants her to go home too, but part of me wants her to stay and recover more. It is scary to think about all she has gone through and how careful we have to be. I am scared she isn't ready and I will do something wrong. But I know they wouldn't send her home if she was not ready or if it was real risky or if they thought I couldn't handle it. She will be 9 days out tomorrow and they said it would take 7-10 or 10-14 days to recover and a month to recover fully. Her stats have So we will see in the morning what they say in rounds.

11/3/08 Day 7

2008-11-03T12:16:00.000-08:00

Ashlyn is eating a little better today. I have fed her twice, and will give her a bath at 4pm. They took her chest tube out and she is off continuous IVs, to see if she will eat better. So far so good, she has eaten close to her normal at every three hours for me. Her cultures came back positive for infection. They took another culture to see if the antibiotics has fought it off. Her Echo from yesterday showed mild narrowing of the pulmonary and a small residual leak, so it doesn't seem to be getting any worse which is good. Tomorrow they will do another Echo. She has a chest x-ray at 3pm and another in the morning to make sure fluid does not collect. Ashlyn is very smiley today, she also has been cooing and looking at her toys hanging above her. I hope the antibiotics are doing their job and now we are on the upside again. She looks really good for only being seven days post surgery, much better than she did right after. I also changed her diaper and picked her up on my own. It is easier now without the chest tube and continuous IV.

PM
She ate well again, about three ounces which is their goal. She has a 24 hour EKG monitor attached called a halter. After her bath she took a good nap before her next feeding. The pictures below are not great quality because they are from my phone. I will post lots more are the days I already posted an entry for when I get home and download from my phone. Just wanted to share how good she is looking. The doctor said she is clinically doing "very good" :) She is getting back to her normal self, especially in the poopy department, she had three today! Her cry still is not back and they may have a speech therapist come in to do a study. Her noises are getting louder so I think in time her cry will comeback too. There may be damage to the vocal chord nerves from the breathing tube, but that was a risk we needed to take to get her better.

11/2/08 Day 6

2008-11-02T12:10:00.000-08:00

Today we were able to hold Ashlyn for the first time in almost a week! John was able to hold her before he went home, which is what we were hoping for. Brooke saw Ashlyn for a little bit too. The took her RA lines and pace wires out, so all she has left are IV lines in her hands and her chest tube. She did not eat very well in the night, but she ate a few times for me in the day. I was able to hold her and feed her too. She had her first poopy diaper too, and the catheter is out so she will have normal diaper changes now. She smiled at me a few times, which made me feel better seeing she hasn't smiled all week. They think she is dehydrated, which they have to do to get the chest tube to drain and may have an infection. As a precaution, they started her on two antibiotics, one very strong. They also did a urine culture and blood culture to see. She had an Echo done to check on the narrowing and residual leak. We should know more tomorrow.

11/1/08 Day 5

2008-11-01T15:51:00.000-07:00

Today Ashlyn had another line in her groin taken out. She has no more lines in her groin. Tomorrow she may get her RA line taken out, which goes to her heart and her pace wires. We should be able to hold her after that. I hope so seeing John is here this weekend. They took her off the milrinone (helps her heart function better) today at 4pm. She is eating about every three hours, and has been taking 2 ounces or three ounces. They took the somanetics sensor off her forehead and she hasn't received oxygen at all today. She continues to do better and look better each day. John and Brooke should be able to see her tomorrow.

10/31/08 Day 4

2008-10-31T11:03:00.000-07:00

Ashlyn had another Echo today. It looked good so they started feeding her. She took 5cc to start (about 1/3 ounce) but she is allowed to eat as much as she wants. They are probably going to take out another line tomorrow. She had two full doses of pain meds today, compared to 6 half doses yesterday. She also ate about an ounce in the evening. They weaned her milrinone down, which is a medicine that helps her heart function better. Her chest drainage is still down, but they want to wait to take the tube out until after they see how the feedings go. She had a bath this evening too. I went home for Halloween, and brought John and Brooke back with me. Brooke will probably get to see her tomorrow. She is looking very good, and besides all the lines, almost normal.

10/30/08 Day 3

2008-10-30T20:22:00.000-07:00

Ashlyn continues to do well each day. The biggest accomplishment today was the removal of the breathing tube for the ventilator! She is breathing on her own with he support of a nose cannula which supplies a little extra oxygen to her. Tomorrow, she probably will get to eat for the first time since Sunday night. She is much more alert, looking at me and making some of her normal noises. She is not able to vocalize yet because of the tube being in her throat makes it sore ans scratchy, but this should last only a few days. She had an Echo done yesterday and there are a few things they are going to monitor. It may be because of the stress her heart had. Her pulmonary has narrowed a bit and her arch is small (arch is what the aorta and pulmonary artery make), which we knew before. There is also a residual leak around the patch they put in her VSD (hole in her heart which allowed blood to flow through and mix, basically a heart murmur). None of the issues are critical, they will just monitor them. Her chest tube drainage is way down. Only 10cc all day which is about 1/3 ounce. She also only had two doses of morphine all day, and both were half doses. She is much happier to have her pacifier back, and it calms her with the help of SweetEase (sugar water). Tomorrow she may have some of the IV lines removed and once the ones going in to her artery are removed, we can hold her :) Tomorrow I will be coming home for Halloween with the girls and John will be returning with me that night for the weekend. I plan to stay here until next Wednesday. Thanks for all your thoughts and prayers, they are working!!!

10/29/08 Day 2

2008-10-29T20:29:00.001-07:00

Ashlyn is still doing well. They are still trying to wean her off the ventilator. She is only on one medicine continuously, that helps her heart function better and beat stronger, similar to the one she came home on before. The drainage from her chest tube is minimal. She is on a diuretic to help remove excess fluid in her tissues, and reduce swelling, but she receives it occasionally. She also receives potassium and calcium to replenish what she loses from he diuretic. The respiratory therapist checked to see if she had an air leak around her air tube, and she does not. The are giving her a steroid to reduce the swelling in her throat so that when they do excavate the tube, she does not have trouble breathing. They are doing blood gases every two hours, so she may need some blood to replenish that. Thank you to everyone who donated in her honor. She definitely had more donated than she needed, but many other lives were saved as well. Thanks for all the thoughts and prayers! Each day she gets better and once the ventilator is removed, she should improve even more quickly.

10/28/08 Day 1

2008-10-28T18:00:00.001-07:00

Ashlyn is doing well. She is slowly being weaned off her ventilator. They have stopped continous pain meds so that she moves around to help with swelling. Her stats are where they want them to be. She received some blood last night, but this is normal. The draining in her chest tube is slowing. She is still oozing fluid from the wound where her pace wires are. They say everything is normal and she looks good. Thanks for all your thoughts and prayers.

Surgery went good

2008-10-27T20:45:00.000-07:00

Ashlyn's surgery started at 9:30 am this morning, after two hours of prep. As of 2:00, the repair was complete. It took them five hours to get her blood to clot. As of 7pm, she is stable and was transported to the CVICU. We are still waiting to see her, it takes them awhile to get her set up in the CVICU. We have been here since 5:25 am, it's been a LONG day. Thanks for all your thoughts and prayers.

Smiley girl

2008-10-25T18:48:00.000-07:00

Here is some recent pictures of Ashlyn. She is getting so big. Surgery is getting real close, less than two days away.

One month old

2008-10-18T11:43:00.001-07:00

A month has already passed since Ashlyn was born. It went so quickly! She has been home for two and a half weeks now. We have had some rough nights. She thinks Mommy should hold her when she sleeps or at least stay up and watch her sleep. We went to the cardiologist last week and everything is looking okay. He increased her medicine dosage and said to take her off the monitor. If her oxygen was too low, we would see it in her and the monitor gives false readings too. She has started to smile more the last few days and recognizes people. I was able to catch part of a smile in one of the pictures below. Monday (10/20) we are going back to St. Pete to meet with the surgeon who will doing her surgery. Friday (10/24) I go back up for pre-surgery testing and then Sunday (10/26) we will be going up for surgery the following morning. Please keep us in your thoughts and prayers, ans hopefully all goes well and she is home healthy and happy soon!

Day 11 (10/1/08) We are home!

2008-10-01T20:24:00.001-07:00

Today we got to bring Ashlyn home!!! It was a late day and we had lots of things to go through before she was finally discharged. She weighs 7 lbs. 12.5 oz., is still eating well, and her stats are good. I have to bring her to her pediatrician tomorrow and back to the cardiologist in St. Pete next week. She is on a monitor so that is comforting. It is going to take some getting used to. The girls and John are happy she's home. Now I get to work on teaching Brooke how to be nice to babies! She wants to help, but in her condition we have to be careful. Thanks for all your thoughts and prayers, they worked! After 14 days I finally got to bring her home! I will not be updating this daily anymore, unless something happens or we have an appointment.

Day 10 (9/30/08)

2008-09-30T17:26:00.000-07:00

The surgeon's office called today. Surgery is scheduled for 10/27/08, four weeks from yesterday. She will be 6 weeks the Thursday after surgery. We are still waiting on the monitor and approval for the monitor. So sometime this week, she will come home. She has to go to her pediatrician within a day or two of discharge, and the cardiologist a week after discharge.

I was able to feed her twice today. She was kind of sleepy her first morning feedings, but very alert for the third feeding. When we left she was awake and content in her bassinet. She is getting annoyed at Mommy taking pictures, but she changes so much each day and I want to capture it. Grampy tried to protect her from Mommy's camera!

Her oxygen level is still fluctuating which is okay as long as it stays above 75%, which today it hit in the 90's for awhile even as high as 98%. Sometimes the sensors are sensitive and give false readings, and she still has not had any spells.

I think she is starting to realize who I am. She acts different when she sees me. Today it looked like she was trying to smile at me while drinking her bottle, but I think at this age they are supposedly too young to smile, unless in their sleep from gas. Hopefully she can come home soon so she can bond with her family. She is starting to bond with me and I try to hold her as much as possible even when sleeping for a bit because I am not with her for more than a few hours a day.

Day 9 (9/29/08)

2008-09-29T18:11:00.000-07:00

They decided today that she needs to be sent home with a PulseOxy monitor, which will monitor her heart rate and oxygen saturation. Her insurance does not cover these unless it is medically necessary, and in her case it isn't according to them. To me, it doesn't make sense, seeing that her heart is having trouble with oxygenated and unoxygenated blood. This also is pushing off her discharge date by thee or four days, because I had to apply for the Children's Medical Services to cover the cost of the monitor before they can release her.

Her feeding have reduced slightly, she now averages 70-85 cc which is a little over two ounces to 2 1/2 ounces. She also has lost an ounce, which the nurse says it's okay for them to fluctuate slightly like that. Today after I feed her, I didn't get her to burp well, and she had her first big spit up all over me.

Tonight they had a cardiology conference so hopefully tomorrow I get to meet with the Cardiologist to see what they decided tonight. Other than that, we are just waiting for that service to go through, so we can get the monitor.

Day 8 (9/28/08)

2008-09-28T17:16:00.000-07:00

Nothing real new today. She seems to be doing well with her medicine. It's called Digoxin and it is used for improving a weakened heart and to treat a fast heart beat. The nurse printed out some information for us to read about it.

John and his Mom came with me today. It was the first time John was able to see her, besides pictures, in almost a week, and the first time for his Mom since the day she was born. Daddy was also able to feed and hold her for the first time in over a week. Nana had lots of snuggle time too.

She continues to do well and her vitals remain good. She was alert for quite awhile today and was eating well. I tried to breast feed her, but she wouldn't latch on, so we opted for the bottle of breast milk. This way Daddy was able to feed her. We will try more when we get home, but more than likely I will continue to pump for her.

When I went to change her before her feed, she had a bm. Then after John feed her she had another. Then he left to find me, and she had one for his Mom. After I came back from pumping she had another for me, and a few minutes after I changed her, she had another one. It's not like we didn't wait a few minutes after she did to see if she was finished lol. I guess she just likes doing it in a fresh diaper. I hope this doesn't continue because we are going to go though diapers like crazy! She was changed five times in a little over an hour!

Day 7 (9/27/08)

2008-09-27T18:59:00.000-07:00

Ashlyn's PDA is open only a tiny bit. Her IV was removed yesterday so all she has on is three sensors on her chest and two oxygen sensors on her feet. They were thinking about sending her home tomorrow, but if she needed a monitor it would be Monday. Then they decided to discuss her case in the Cardiology conference they have Monday nights, so it may be Tuesday. We are keeping our fingers crossed. I am not in a rush though, I want her to come home when they think she is ready.

Her vitals have all remained good. Her oxygen saturation was varying from 85% to 94% today when I was there. I was able to feed her soon after I got there. I held her for a while after and then went to eat and pump. It was about an hour later I came back and she was still up but quiet. So I held her and talked to her until she fell asleep. She definitely is more alert as each day passes. She is eating three ounces every 4-5 hours and sleeping for good chunks of time.

They put her on medicine today to help her breathing. I think it is called Liocin. I will learn more about it before she comes home. The medicine can be administered by adding it to her bottle or syringe to her mouth, but I think it will be easier to add to her bottle. They also want me to try putting her to breast, which probably will help regulate my milk supply. Currently I am getting about two ounces or more every three hours and she has 3 ounces every four hours, so it's almost enough, I just need to get on her schedule. We will see how it goes when we get home and if she latches, otherwise I will continue to pump for her and supplement formula when needed.

Tomorrow John and his Mom are going up with me. This will be the first time Daddy has seen her in almost a week! He will get to hold her and feed her too. When he was there last, we weren't able to yet. His Mom hasn't seen her since the day she was born, so she is excited too.

Thanks again for all the thoughts and prayers. Almost a week ago, I never thought we would be this close to coming home with her. I know we still have a long road ahead of us with her surgery, but at least we get to bond with her at home and she can be with her sisters and her family.

Day 6 Still looking good

2008-09-26T19:15:00.001-07:00

Not a lot of news today. I met with her cardiologist, Dr Dadlani. He said her PDA is still open about 1mm so they are going to do another Echo tomorrow to see if it closed. More than likely she will not have to have surgery Tuesday. They are going to wait 4-6 weeks then. They are going to talk about her in the conference they have on Monday night. At this point, it shouldn't effect her aorta when it closes. It usually take 2-3 days to close and today was day 3.

She is also on what they call ad-lib feed, meaning she can eat as much as she wants, when she wants. Earlier, the neonatologist Dr. Germaine said she could eat 2 ounces every 3 hours or 3 ounces every 4 hours. Then Dr. Dadlani the cardiologist said she can ad-lib her feeds. We think they are doing this as a test because too much food can cause excess fluid in her lungs and cause her trouble, so they are doing it before she is discharged so we don't run into a problem at home.

I really am not nervous about her coming home before surgery, I know that they would not send her home if she wasn't strong enough to handle it. Dr. Dadlani said that we would treat her at home as a normal newborn. They can't wait like six months to do the surgery, but the 4-6 weeks would be beneficial.

I spoke with the nurse a little while ago. She went 5 hours from the feed I gave her at 12:30 and another 4 hours after that one. Eating more milk is definitely filling her up and helping her get more sleep. She is 4 grams shy of 8lbs, which is about an ounce a day growth since she arrived there. That is pretty close to what normal newborns gain. She also had a bath because she was sweaty, which could either be from normal heat from sleep or that cardiac babies tend to be more warm. The nurse Holly said she was pretty mad afterwards, because she just wanted to eat. She had definitely become a little piggy and loves her bottle. I am pumping, but right now they have to supplement with formula. I am not producing enough milk for her yet. The amount she drinks has jumped rapidly in the last few days and my supply has adjusted yet.

I spoke with the blood bank today and still need to make another phone call. They are unsure of how to go about receiving donations in her name that wouldn't be directly for her. We are pretty sure the surgery is going to be put off, and the blood she needs has to be less than 5 days old, so I am waiting to set it up. I will be in contact with them next week to see what we can do. The man I spoke with today thinks that they can accept donations in her name from anywhere, but they don't have a credit system set up. They may be able to set one up in this situation though. I will let you know when I know more about it. Thank you for all you interest in donating for Ashlyn!

Thanks again for all the support, prayers and thoughts. They continue to help her everyday and it is comforting to know how many people out there truly care, even the ones who don't know us personally. I never thought I would be going through something like this, and it is great knowing how much people care and want to help.

Day 5 (9/25/08) Looking up!

2008-09-25T17:41:00.000-07:00

Today was a very promising day. She has been eating very well, 2 ounces each feeding and is much more content. She was quite alert during the feeding looking at me, Grampy and my sister Jodi. I spoke with the Cardiologist on call to find out the results of the Echo. So far it looks good, the arch (PDA) between the aorta and pulmonary artery is still open a little bit, but the aorta is not narrowing. It shouldn't narrow a significant amount before the PDA closes all the way. She did not expect them to do surgery Tuesday, but she isn't sure what her Cardiologist was thinking.

I called to check on her a little while ago. I was transferred about 8 times and started to get a little nervous. But it was a good thing. They had more babies arrive today and had to move someone up. From Pod 2 she was in the best shape and was bumped up to Pod 4! From the way the social worker Elaine described it this morning, they move up from Pod to Pod and after Pod 4, they moved up to the third floor NICU. This means they are closer to being discharged!

Her nurse Holly said she has been sleeping since she got there and was getting ready to feed her. She is going to read the Cardiology report more thoroughly and when I call later tonight she will give me more detail. Basically, she said they are probably going to do the surgery in 6-8 weeks. The arch (PDA) is still open but she said it opens and closes and as long as it doesn't cause her trouble, she will do okay. So far so good! She will come home before surgery and she said it may be as early as the beginning of next week! As long as she continues to eat well, urinate and have bm's, and her vitals remain good. She also said it was a good graduation from Pod 2 to Pod 4.

Things are definitely looking up and hopefully soon I get to take our baby girl home! I am also looking into the blood donation thing. My Mom thinks there is a way to donate in her name so she gets credit for it, regardless of your blood type or if they can use it for her. I know there are a lot of you locally and around the country who would be willing to donate for Ashlyn, and when I find out more information tomorrow. I will post it here.

Thanks for all your thoughts, prayers and support, she is improving each day. I would also like to add a special thanks to my best friend Jessica's work for their generous donations to help our family out. Thank you for helping in our time of need and as soon as I can I will send photos and a card to you all. I would also like to thank my parents for all they have done and are doing for us, and being there when I needed them most, not that I ever doubted they wouldn't. And Jessica, who truly is my best friend for many years who has stood by me through everything. I hope one day I can help you the way you help me. I love you all!

Day 4 (9/24/08)

2008-09-24T18:03:00.000-07:00

Ashlyn continued to do very well today. Her feeds were good, though she wanted more and was sure to let all the nurses know! Her lungs definitely are working great. They started her feeds at 10 cc (about 1/3 ounce) this morning and were increasing it by 10 cc each feeding. She was drinking 2 ounces of formula in the hospital before this happened so she is not happy about the amount, but they need to increase slowly. She is still off the oxygen and was very alert today. My Mom came with me and was able to hold her too, the first time in almost a week. We arrived just as they were feeding her, and when the next feed time came around I was able to try to breastfeed. She tried very hard to latch on, and then I fed her breast milk from a bottle. She also gave Grandma a hard time when I went to pump, she wanted more food and was very upset that the pacifier did not provide milk.

Tomorrow is a big day. Not only will she be one week, but she also has her EKG to see how her aorta is doing. If it is narrowing, she will have surgery Tuesday, if not then they will probably hold off until she is a month to a month and a half old. Also, she will need blood for her surgery so if you are O+ and in Florida and would like to donate, please let me know. There are some guidelines I would need to let you know about.

I called tonight a little after 8:00. She was feeding and her weight is up to 7lbs. 12 oz. She was 7 lbs. 8 oz. a birth, so she is gaining weight well. She is now up to 45 cc of breast milk, about 1 1/2 ounces. They will allow her to go up to 2 1/2 ounces, which should make her very happy.

Thanks again for all your continued support and prayers. They are working more each day!

Thanks to everyone

2008-09-23T18:46:00.000-07:00

Thank you for all your thoughts, prayers and support. I started this blog to keep all my friends, family and supporters in the loop as we undergo this scary journey. I will try to update at least once a day about her progress. I have posted pictures for each day she has been in at All Children's. I also included the story of how this all began.

As of 9:10pm tonight, she had her first feed since Saturday night of 5 cc at 7:00 pm. She wanted more! They have to gradually increase the amount though. She is doing amazingly well, has been off oxygen since 4:15pm yesterday and her PGE's since 4:00 am this morning. Her oxygen has stayed above 85% saturation. She was fed some sugar water earlier today too, and enjoyed it. I was also able to hold her today for the first time since Saturday. Her next feed is at 10:00pm. She was feed formula, but I let the nurse know that I have been pumping and there is breast milk in the deep freeze at the hospital.

I also spoke with the surgeon Dr. Jacobs tonight. He has tentatively scheduled surgery for this upcoming Tuesday. They are still taking it day by day and will know more after another EKG ultrasound on Thursday. If she continues to feed well, which I think she will, and everything remains good, they may put off the surgery. Otherwise she will go in Tuesday morning. Their main concern with t he surgery is not reversing the valves but the smaller ones that are vital for heart function. He does expect it to go well, but there can always be complications.

At this point, it is no longer in my hands. All I can do is pray for a safe and successful surgery and recovery. I look forward to the day we can finally take our sweet baby girl home and to her sisters. Thank you for your continued support and prayers. It means a lot to us!

Day 3 Pictures

2008-09-23T18:43:00.001-07:00

Day 2 Pictures

2008-09-23T18:41:00.000-07:00

Day 1 Pictures

2008-09-23T18:13:00.000-07:00

Ashlyn's Story

2008-09-23T18:06:00.000-07:00

From myspace on 9/22/08 www.myspace.com/car41183

I had Ashlyn on Thursday 9/18/08. She was just fine, eating well and alert. When we went to be released on Friday, they wanted to keep her because she was running a fever. They ran blood work on her and a culture to see what was causing the fever. She stayed in the room with me until I went home on Saturday.

Around 2:30 on Sunday morning (9/21), the NICU at the hospital I delivered at called to tell me that Ashlyn was having trouble breathing, they had put her on oxygen and taken a x-ray of her heart. The x-ray showed that her heart was enlarged and they wanted to send her to All Children's Hospital in St. Petersburg, FL. They are not qualified to deal with heart conditions there, it is a very small NICU and very new also.We went up there to release her and then went home to get some things to head to St. Pete. She made the trip very well, and once we arrived she was settled.

Then the waiting game started. We had to wait for an EKG of her heart to see what was wrong. Sunday afternoon we met with a cardiologist who explained that she has Double Outlet Right Ventricle heart defect. This occurs in 1 out of 100 births. Basically, the aorta and the pulmonary artery are reversed and the oxygenated and not oxygenated blood is mixing. After meeting with another cardiologist today (9/22) to discuss surgery and options, it was explained more. In the womb, there is a tube called a PDA or DA that connects the aorta and pulmonary artery and this is how the babies receive oxygen. At two to three days after birth, the tube closes down and the heart begins working normally. The surgery she needs would reverse the valves and close up a hole in her heart.

Monday (9/22) Ashlyn's oxygen tube was removed around 4:00 and as of a few minutes ago, it is still out and she is breathing on her own. If this continues, she will be taken off her PGE's(medicine to keep the PDA or DA tube open) and monitored. If her aorta does not narrow when the tube closes, her vitals remain good along with breathing and she eats well, she may come home to grow some more before surgery. The surgery would take place after one or two months of age. If the aorta narrows, she will have surgery next week.

Amazing, we have been very strong through this. There really isn't another choice, and she needs us to be there to listen and learn and support her. I guess what comforts me most is that I in no way caused this, they could not have picked it up in the ultrasounds I had (they only check that there are 4 chambers, which she has) and they are not rushing to do this as if it was an emergency. She is doing very well, and is very healthy otherwise. She would recover better is they waited to do the surgery until she is bigger and stronger.Right now, it's still just waiting but I feel confident that she is receiving the best possible care. She is in a great hospital and can overcome this obstacle in her life.

Thank you for all your thoughts and prayers, they are working!