Heartstrings

"Cheese" on Christmas Eve

2011-12-27T17:59:00.001-05:00

A New Season

2011-10-02T21:39:00.003-04:00

It's been 2 1/2 months since surgery. Ashlyn is fully recovered, and we are going into a new season of our lives. Just tonight I was saying to Eric that I can't believe we went through three heart surgeries and how thankful I am that we don't have to think of anymore ahead. Ashlyn turned 3 last month, and she loves being 3! She was able to get through the entire recovery period without getting sick. This week though she did weather some fevers, but she is well now, and her appetite really has been the best it's ever been. Her sleeping is a little better, but we still have some nights that she wakes up one time. She gets her Mommy all to herself while her big brother is in Kindergarten all day. However, she does have a lot of time during the week in therapy. She has all new therapists now that she's three...speech, OT, PT and a special teacher. Although she is developmentally behind in these areas, she really is making progress every week, and hopefully now that her heart is fixed she can catch up. We are getting used to her new routine.

Ashlyn had her yearly visit with the endocrinologist last month. She does not need any growth hormones right now because her growth is actually quite good, and she is in the 75th percentile compared to other girls with TS. We also went down to CHOP this past Friday for her echo and cardiology visit. She will still need her heart medications for now, but she is off of Lasix, and there has been no fluid build up, and she is now clear of any post-op complications. I think her doctor really expected there to be more complications and attributes it to her being lucky, but I know that all of the prayers sent her way had more to do with it than luck. Her pulse ox in the office was 84%, but today at home while asleep we got a reading of 90%. At this point Ashlyn will only need to see cardiology every six months. Later this month she will visit the Feeding Team, who will evaluate her growth and manage her tube feedings.

2011-09-20T14:14:00.005-04:00

A Little Scare

2011-08-21T21:14:00.004-04:00

Ashlyn has been doing really well at home these last weeks of recovery. Her appetite has improved some, and she is just as playful as ever. We are still having some issues with going to sleep and some separation anxiety from her traumatizing experiences in the hospital, and there are some issues that I think are just related to being almost 3. Last night before going to bed I noticed her incision looked a little puffy, and there was redness around it. I took her to our local hospital ER, and there were no signs of any infection...no fever, drainage or pus pockets...just inflammation. I called down to CHOP and was advised to bring her in the next day if there was no improvement the next morning. Thankfully this morning the incision looked much better, and throughout the day it has improved more and more. It must of gotten irritated from playing ball or being on the slide that day. It was a reminder that even though she thinks she is perfectly fine, she still has some healing left to go!

One Week Home

2011-07-27T09:26:00.003-04:00

It is hard for me to believe that today marks one week since Ashlyn was discharged from the hospital. Many have been calling and asking how she's been doing, so I know I am overdue for an update (not that I mind the phone calls). Ashlyn's follow-up visit to CHOP was changed from Friday to Monday because I unexpectedly encountered a bout of strep throat, but I am much better now that I am on the antibiotics. My sister Joanne and I took Ashlyn down to CHOP Monday morning, and we enjoyed some time in the cafeteria and gift shop before Joanne left for the train station to get to the airport for her flight back to Tennessee. Then Ashlyn had her echo, and EKG and a visit with the cardiologist. Things looked OK on the echo, which was just a quick check for any fluid around the heart or in the lungs. She also had the suture removed from where her chest tube was. After the appointment she had her chest x-ray and a blood test. It was a long day, and I didn't leave until 4 pm right after a Phillies game let out...so you can imagine the traffic. Ashlyn will stay on Lasix for a while and then it will be tapered off. Hopefully eventually she can discontinue the heart medications too. Dr. Goldmuntz will call next week and let me know if she want another x-ray.

Since being home Ashlyn has been having some sleep issues. She had a lot done while in her bed in the hospital, and it was probably traumatizing. She has been clingy and hasn' t been wanting to sleep in her bed and would wake up at night. The last two nights, however, have been much better, and last night was the first night she fell asleep in her bed. I'm hoping that with time she will learn that her own bed is a safe place where she will have undisturbed rest.

We've also been having some issues with diarrhea and poor appetite. I have had to add a tube feeding during her nap time. She does eat some but often needs to sit on my lap and be encouraged to eat. Our church has started bringing us meals, and last night I was excited to see Ashlyn readily sit in her booster seat and start eating the mashed potatoes that were brought! It's only been two weeks since surgery, so I am trusting that her appetite will improve as her body continues to heal. Thank you for your prayers during these days of recovery.

Day 6: Home

2011-07-20T16:14:00.003-04:00

Ashlyn's x-ray this morning showed that she is responding to the oral Lasix, and she was given the "All Clear" to be discharged. She is now very happy at home playing with her familiar toys. Even though she is home now, there is still recovery that needs to continue. She will need a followup on Friday to repeat the chest x-ray and echo and to make sure the incision is healing and remove a stitch from her chest tube. She will continue to be on Lasix for a few weeks and may still needs some pain meds. It will take 2-4 weeks for the incision to heal and 6-8 weeks for the sternum to completely heal, so there are precautions during that time. Being at home will help her get the much needed rest she has been missing because she really did not sleep well at all in the hospital (and much needed rest for us too).

It really is a wonderful feeling having our little girl back the way she was before the surgery only with a completed heart repair. It's hard to believe she has gone through three of these surgeries but wonderful knowing she won't have any more. She is a little walking reminder of God's faithfulness, and God has wrapped His arms around us through our family, friends and church family. We are very blessed. Thank you!

Day 5

2011-07-19T14:41:00.003-04:00

Ashlyn had a very unrestful night last night and would wake up with every little thing the nurse came in for. She had a chest x-ray at 5 am and more blood drawn at 6. She has been left alone, however, most of the day today and is walking around everywhere! She was evaluated by PT and OT to make sure she is able to do all the things she was able to do before the surgery. She went up and down steps and was very active during play. The x-ray showed that a lot of the fluid and areas of lung collapse have improved a great deal. There is still some fluid, but it can be managed with oral Lasix, and there is no more need for IV treatment. The echo yesterday showed that things are functioning well. Her appetite today is the best it's been since surgery. Her level of pain also seems improved. She is almost totally her old self again, which is just amazing to me considering that her surgery was just five days ago. Tomorrow morning she will have another x-ray, and as long as it shows that her healing is continuing in the right direction, she may be able to go home. She would need follow-up with another chest x-ray later on to make sure all the fluid is gone.

We can' t thank everyone enough for bathing her in your prayers and for your generous support. Continue to pray that everything moves in the right direction.

Day 4

2011-07-18T19:26:00.002-04:00

Today started out a little rough but seems to be ending well. Ashlyn was anxious this morning, perhaps from pain. She got a bath and got cleaned up, but she screamed the whole time. After this the nurse noticed her IV was no longer functional, so she had to have it removed and a new one put in. Shortly after this the ultrasound tech came in to do an echocardiogram. Needless to say she was quite tired this afternoon and took a long nap. This afternoon and evening she is like a new person. She is playful and interactive and even got up to stand and walk around for the first time since surgery. The more she moves around, the better it is for the fluid in her chest to break up and get cleared out. She was also started on albumin (a blood product) treatments today to help pull the fluid out of the lungs, and the Lasix she has been getting will help her body get rid of it. She's been off of oxygen today and seems to be doing OK. Her appetite is a little improved today; she drank almost a whole carton of chocolate milk this morning, and tonight she ate some pizza. She gets Pedialyte through her G-tube to keep her hydrated during the day and to make up for what she's not drinking, and overnight she still gets her formula. I'm hoping for a restful night (she still wakes up coughing at night) and a good report on her x-ray tomorrow.

2011-07-17T22:26:00.002-04:00

Day 3

Ashlyn was moved to CCU last night. She had some issues with vomiting yesterday, most likely related to the pain meds. She was really uncomfortable before bed and needed a dose of morphine to get to sleep. She didn't sleep through the whole night either, but today was a much better day. She was much brighter, more comfortable, and even smiled and seemed more like herself. She still is not eating or drinking much, but ate a little more than yesterday. Now that her chest tube is out, it is expected that some fluid will start to collect in the chest. Sure enough this morning's x-ray did show some fluid building up on the right side. It was exciting to see Ashlyn out of bed today and playing with toys in the playroom this evening. She is still too weak to stand, but the more she gets moving, the more easily she can get rid of the fluid. She also is still being weaned off oxygen; she was off of it for a while today, but after a few hours it needed to beturned back on.

It has truly been wonderful to know that Ashlyn has been completely surrounded by the prayers of so many, even some we don't know. We are thankful as we see those prayers at work. Please continue to pray for her healing and specifically for an improved appetite.

Day 2

2011-07-16T14:07:00.004-04:00

It is now a little more than 48 hours post surgery, and Ashlyn has made some remarkable progress since yesterday. She has been weaned off of sedation medication and has been mostly awake today though not quite herself. This morning her urinary cath was removed, and her chest x-ray was clear. Later she had the lines out of her chest removed along with the big chest tube which was draining fluid off. Having the chest tube out is a significant milestone in recovering from Fontan surgery, the doctor said today. The process of weaning her off of oxygen through her nasal cannula was also begun today. So far her pulse ox remains in the high 80's or low 90's. She may move out of ICU and to the Cardiac Care Unit today. Thank you for your continued prayers. The next step is getting her to eat and drink. She tolerated her overnight feed well last night but has only had a little to drink on her own. I am hopeful that she will be feeling a little better each day.

Day 1 Post Surgery

2011-07-15T09:58:00.004-04:00

Ashlyn had a restful night last night. This morning she had a chest x-ray, and it looked great! She continues to be very sleepy this morning (still on some sedation meds) but wakes up coughing, which can be painful. We want her to cough though to get rid of the "junk." She has been drinking apple juice from her cup and lets us know when she wants more. The line into her heart will remain for one more day. Normally it would come out, but as Eric mentioned in the last update, she was very agitated coming out of the anesthesia, and we had a mess when her arterial line came out last night. So just in case she would do the same with her IV, we want to have some access to get meds in. She was switched to oral pain medication, and we will introduce food later when she is more awake after the sedation meds are stopped. The first 72 hours post-op are the most painful and uncomfortable, but it should get better a little bit each day. It is very exciting to see her pulse ox up in the low 90's where they've never been before in her life. Her surgery was called a fenestrated Fontan. A fenestration, or hole, is left in as a "pop off valve" to help reduce the amount of fluid build up in the chest. It will close on its own within the next six months. Once this closes her pulse ox should go up to 99-100%.

Surgery is done and went well.

2011-07-14T21:42:00.006-04:00

Surgery is over and we spoke to Ashlyn's surgeon and everything went good according to his expectations. What a blessing!

Please pray for Ashlyn tonight and through out her recovery over these next days and possibly weeks in the hospital. Ever since she came out of surgery she has been very agitated and not resting well, she does not stay still and roles around and wants to sit up which pulls the cords and wires attached to her body, she even pulled out her iv catheter which made a huge mess and was very scary. The staff at the hospital are great and took care of things,but please continue to think of and pray for Ashlyn as she recovers.

2011-07-14T08:20:00.002-04:00

Ashlyn slept well last night. She had her MRI this morning. We spoke to Dr. Spray, and she is undergoing the surgery as I write this. The surgery is expected to take 2-3 hours and then she will recover in the Cardiac ICU. All kids develop fluid around the lungs postoperatively, but some are able to get rid of the fluid more quickly. How long she stays in the hospital will depend on quickly her fluid can drain off. Ashlyn had a baseline chest x-ray taken last night, and every morning another x-ray will be taken to assess the fluid. So she could be here a few days or a couple weeks. For Dr. Spray this is pretty routine, and he called us "veterans" since we've been through two other heart surgeries, but being a veteran doesn't make this any easier!

Cath Done

2011-07-13T21:52:00.003-04:00

Ashlyn's cath procedure went well without complications. Her pressures look really good, and the embolization of some of the collateral vessels was successful without coils. Dr. Rome used what he described as plastic particles to close the vessels. Ashlyn was very agitated waking up from anesthesia and gave the recovery staff a chance to see what she is made of! Her throat was dry and probably irritated from the breathing tube, and she drank almost 3 sippy cups full of apple juice. She did calm down though and even ate a few bites of pizza tonight! She doesn't have to lie flat; the main concern is keeping her calm, and I think she will probably drift off to sleep soon.

Tomorrow morning around 6:30 she will have an MRI with heart surgery to follow around 8:15. After surgery she will be taken to Cardiac ICU.

In the Cath Lab...

2011-07-13T15:28:00.004-04:00

We arrived here at CHOP just before lunchtime today. As of right now Ashlyn is asleep under anesthesia and the catheterization is just starting. Dr. Rome will get a good look at everything and make decisions whether or not to close off some of the collateral vessels. These are extra vessels that are formed in children with her same heart condition. Once the Fontan surgery is completed tomorrow, the vessels are not helpful to her anymore and can even cause problems. So a decision needs to be made as to whether or not some of them should be closed off with small platinum coils (little springs) that cause the blood vessel to clot. There are some rare but serious risks that can happen with this, so we are asking for prayers that there will be no complications. The procedure may take up to four hours (much longer than we had thought). If the coils are placed, Ashlyn may need an MRI tomorrow just before going into surgery to assess the progress that is made. Once Ashlyn is finished with the cath, she will have to lie flat for six hours, so pray that she stays calm and content (with a little help from Elmo perhaps) during that time.

We do not have the actual time of surgery yet, but we will update everyone once we are made aware.

One Week Away...

2011-07-07T16:33:00.004-04:00

Ashlyn was down at CHOP this morning for her pre-visit appointment. It was a stressful time for her, and we were unable to get the EKG or blood pressures. Her pulse ox was only 72%, but that was with her being upset. The chest x-ray and blood draw went quickly though, and we left by lunchtime. The hospital will call us Tuesday night and give us eating instructions as well as the time to arrive on Wednesday morning for her heart cath.

It's hard to believe that Ashlyn's final heart surgery is just one week away. We have been so blessed and overwhelmed by the support, thoughtfulness, generosity and prayers of our families as well as our friends and church family. We appreciate your continued prayers for...

Ashlyn that she would remain healthy this next week and stay strong throughout her recovery

Dr. Spray, her surgeon, and all of the hospital staff involved with her care

Branden, that he will handle the changes in routine well

Eric & me, that we will rely on the Lord and be a strong support to Ashlyn, and also for safety for Eric as he will most likely be traveling back and forth to CHOP frequently

"But blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit. " Jeremiah 17:7&8

New Dates!!

2011-05-27T10:07:00.002-04:00

Due to some scheduling conflicts, Ashlyn's dates have been changed. She will be admitted on Wed. July 13th for the cardiac cath and have surgery on Thurs. July 14th.

Finally... a date for surgery

2011-05-24T10:06:00.003-04:00

Believe it or not, I have dates for Ashlyn's cath & surgery. She will be admitted to CHOP on Monday July 11th for the cardiac cath and have the Fontan surgery on her heart the following day on July 12th. The pre-admission testing will be Thurs July 7th at CHOP. This is a day of testing prior to surgery and includes an EKG, chest x-ray and bloodwork. So Ashlyn could use your prayers that she will stay healthy and continue eating well until then. The day of testing will also be a challenge for her, so pray that all goes smoothly that day. Everything still needs to be approved by insurance. I don't expect there to be any problems, but pray that everything goes through with that as well. Thank you all in advance for your prayers & support during these days and the weeks of recovery afterward.

Here is some information I found on the CHOP website about the Fontan procedure:

This operation allows all the oxygen-poor (blue) blood returning to the heart to flow into the pulmonary artery, greatly improving the oxygenation of the blood. The Glenn shunt, connecting the superior vena cava to the right atrium, is left in place. A second connection is made directing blood from the inferior vena cava to the right pulmonary artery. This connection can be created in slightly different variations, depending on the method your child's surgeon prefers, and what is best for your child.

Surgery Ahead

2011-05-02T13:47:00.002-04:00

Ashlyn has been a busy girl doing all the things little girls like to do...coloring, playing with dolls and puzzles and her big brother, giving hugs & kisses and enjoying the pink bottle of bubbles from her Easter basket. Her eating continues to be a challenge, and sometimes she will only take 2 or 3 bites at a meal. She has discovered, however, that she loves pizza, so now we have another food choice to offer. She had her yearly evaluations recently with all of her Early Intervention therapists. She is still far behind on many things, especially communication, but she has age appropriate social and fine motor skills. Her physical therapy evaluation put her at 18 months, but her new walking skills are a huge accomplishment for her, and now we are working on skills like kicking and stepping over things. Some new goals were set, and this summer she will have an evaluation through the Intermediate Unit, who will take over her services when she turns 3.

We had a trip to CHOP last Thursday to see Ashlyn's cardiology doctor. Her pulse ox is down to 79% (even after calming down from crying from the probe put on her toe). She has made some nice developmental progress, and with her sats being lower it is time to move forward with the cardiac cath and surgery, possibly even this month. The plan was to have her admitted to CHOP for the cath and then stay in the hospital for heart surgery the next day. I am still waiting to hear back from the scheduler about finalizing dates and times, so check back for an update later this week.

It's hard to believe this time is now arriving. It's going to be a difficult time of recovery and set backs. The most common post-op complications for the Fontan surgery are effusions (fluid building up in the chest cavity or other places), and this can cause an extended hospital stay and recovery time. However, I am hoping that with lots of prayer, there will be good quick healing. I know that my fiesty little girl will pull through everything, and once this is done there will be no more heart surgeries, her oxygen level will be up where it should be, and continued growth and development can take place.

Update

2011-02-25T16:14:00.002-05:00

Yesterday was Ashlyn's cardiology appointment down at CHOP. She was a little more cooperative than usual, but of course it's not her favorite thing to get weighed, measured and have vital signs taken. Her pulse ox was 82%. Her weight and length really hadn't changed much since November. The plan is for Ashlyn to get a cardiac cath hopefully sometime in April. As far as the heart surgery, Dr. Goldmuntz seemed concerned about the Turner's Syndrome possibly causing more complications than usual during the recovery period. So it looks like the surgery isn't going to be in April. I will hear back from her at some point after she collaborates with the surgeon and other cardiologists about what is the best plan for Ashlyn regarding when to have the surgery.

Ashlyn has made great progress with walking, and I am relieved to know that she will have mastered this skill before heart surgery has a chance to set her back farther again. Her eating skills have improved, and there is much less food being thrown onto the floor. However, there is not much progress with the amount of food she is eating. Maybe this is why she isn't gaining much weight. This is an area where we need some prayer. Her OT comes every week and works on different strategies for getting her to eat a little more at each meal. Every day is a little different. Sometimes she eats well and sometimes she doesn't want it. Ashlyn is a lot of fun to have around. She gives big hugs but has big tantrums...she wants to do "big girl" things but is still so little...she has a big brother but sometimes she thinks she is bigger. I like to describe her as a big person in a little body!

Photo Gallery

2011-02-18T21:39:00.007-05:00

A little video clip of a great session with her physical therapist...

Thanks to my sister-in-law Holly for editing these pictures and helping me get these on here!

Cardiology Update

2010-12-28T20:11:00.003-05:00

I received a phone call from Ashlyn's cardiologist this morning, and she wants to go ahead with the cardiac catheterization sometime in March or April with the heart surgery planned for April or May. This will give the doctors a chance to get even more information about what is going on inside to plan and prepare for the surgery and her care afterward. There are many differing opinions about whether or not to close off the collaterals and even whether she needs the cath before surgery, but Dr. Goldmuntz decided to go ahead with the cath for the purpose of collecting the information. It's not likely that they will close off the extra vessels, but if they see the need to at that time, then they can.

Hope everyone had a wonderful Christmas holiday and have a Happy New Year!

Feeding Appointment

2010-12-20T18:00:00.002-05:00

Ashlyn went to the Feeding Team again last week, and her weight was 21 lbs 13 oz. Unfortunately this is a few ounces less than her last visit back in September. The good news is that she grew an inch! I had been trying to cut out her evening tube feeding. She's now getting a little more formula overnight and still gets her bolus during her afternoon nap. She is getting about half of her calories through her tube and the other half through what she is eating. She really has come a long way, and even though her progress seems slow, I have to remind myself of where she was a year ago.

MRI Results

2010-11-19T14:37:00.002-05:00

Thanks to all who were praying for Ashlyn last week during her MRI. Everything went well with the anesthesia, and she recovered very well. The congestion from her cold is almost completely gone now.

Her cardiologist called me today with her MRI results, and everything for the most part looks good. The function of her right ventricle is better than expected, being within the mildly diminished to low normal range, although the muscle is thickened (from working so hard). The valves look good with no leaking, and the area where her surgery was done looks good also. She does have what are called collaterals...these are extra vessels her body has formed to get more blood over to her lungs, and it is quite "normal" for a child with a hypoplastic left heart. However, there is a high proportion of blood going through these collateral vessels, and there is a possibility that Ashlyn will need a cardiac catheterization to close some of these off before her next surgery. This is not definite yet; Dr. Goldmuntz wants to have the MRI looked at by other associates before deciding how to proceed. I will update you all when hear back from her.

Have a wonderful Thanksgiving!

Sickness

2010-11-08T13:45:00.003-05:00

It seems like as soon as the cold weather comes, the colds and fevers and sickness come too, and it's one after another until the summer comes. Ashlyn is getting over a stubborn cold. It has thrown off her appetite and sleeping, and the congestion doesn't seem to go away. This week I am actually very thankful that she still has a G-tube so I can keep her hydrated and nourished. She seems to finally be starting to eat better today and slept all night for the first time in the last four days. I've been praying that she be well enough for her cardiac MRI scheduled for this Thursday. It was such a headache to schedule it, and the last thing I would want is to have to postpone it because she isn't well enough for the sedation. So I'm trying to keep her home and away from germs as much as possible this week.

On a positive note Ashlyn finally started taking some independent steps this week. Just small steps...but one small step for her is like a giant leap!

Swallow Study

2010-09-25T14:02:00.002-04:00

Ashlyn had a barium swallow study done this past week to test her ability to swallow thin liquids. She was quite upset at first, but we were able to get pictures of her taking some swallows of barium mixed with thin yogurt. She only aspirated one time but coughed afterward. The speech pathologist who did the study recommended doing a trial of having her drink thin liquids with careful monitoring. Her Early Intervention OT watched her drink some water and milk yesterday with no problems. She still prefers her yogurt drink of course. She will follow up with the CHOP feeding team next week. Ashlyn has been making some nice progress with eating too. This week she ate almost a whole pancake with a fork!

Her cardiac MRI is scheduled for November 11. She will need to be sedated for the procedure.

And one more thing...Ashlyn just turned 2! And she has all the independence that goes with being a two-year-old!

Ashlyn's First Beach Trip

2010-09-05T15:32:00.002-04:00

Branden with cousin Reuben

Ashlyn in Ocean City, NJ

Growing Girl

2010-08-19T11:56:00.002-04:00

It had been three months since Ashlyn visited the feeding team, and she had another visit yesterday. She weighs 21 lbs 13 oz and is now 31 inches long! She's had some wonderful growth over the last three months. She has stayed healthy, and her eating is the best it's ever been. She still eats pureed foods, but she can handle thicker textures than she used to, and she can eat little pieces of graham cracker or other meltable foods. She can also have finely diced fruits and even ate some of Branden's birthday cake. She loves her yogurt drink in the sippy cup and easily drinks 6 oz of it throughout the day. I've been skipping her morning tube feeding and just giving her the yogurt smoothie, which has the same calories per ounce has her formula. Occasionally she will find Branden's apple juice and starts drinking it. She's doesn't sound congested afterward, but it was recommended that we repeat the barium swallow test to make sure it's safe for her to have thinner liquids again. The goal now is for her to continue eating well and eat a little more per meal so we can start eliminating the other tube feeds.

It's hard for me to believe that Ashlyn is going to be 2 next month. I would love to see her walk before then but she is not there yet. She is definitely getting stronger but just doesn't want to take any steps without holding on to something. I love watching her learn to talk and communicate. Here's a list of her favorite words as of now: Mommy, Daddy, uh-oh, baby, birdie, monkey, hi, eyes. She also signs moon, bath, more, toothbrush and quiet.

Keeping Cool

2010-07-09T13:34:00.003-04:00

Ashlyn had another echo and cardiology visit on July 8. Her echo looks about the same as last time, so she will continue on heart meds. She is quite uncooperative for the echo (Miss Independent), so to get a thorough look at everything, she will be sedated and have an MRI sometime in October or November. She is growing nicely and has managed to stay healthy over the last two months. In the last few days she has even been drinking enough to skip some of her tube feedings! At the cardiology appointment I was a little surprised to find us talking about her third surgery already. Her doctor thought that it could be spring of 2011 after the winter weather and viruses have passed. I didn't want to think about her heart surgery already, but in some ways I would rather get it over with sooner than later. Hopefully the MRI could replace the cardiac catheterization that's usually done before heart surgery. We will see her cardiologist again on Novemeber 11 after the MRI. She also sees the Feeding Team again later this month.

Spring has sprung

2010-04-16T15:12:00.003-04:00

March

2010-03-19T14:44:00.003-04:00

It looks like some spring weather has arrived, but inside my heart it still feels like winter since my mom passed away on February 16. However, the sun keeps rising and setting and life must go on. Ashlyn saw the feeding team, cardiology and the pediatrician all in this month so far. She weighs about 19 1/2 lbs. She was switched to a higher calorie pediatric formula (covered by insurance so no more expensive cans of baby formula), and it has given her some good weight gain. Since it is a heavier formula, it's creating some issues with her appetite, and so now we're playing the game of balancing tube feedings and regular food without causing reflux, which she seems to be having at night now.

Her echo hasn't changed, and her right ventricle (the only one that works!) still doesn't contract as well as it should, but since her weight gain is good, the cardiologist just wants to keep her on her heart meds and check it again in four months. The doctor also wanted to get some baseline bloodwork.

She's now 18 months old, but her recent PT evaluation put her at the level of a nine month old in gross motor skills. She's made some huge strides, however, in her development since January, and that's more important than the test results. She has a huge personality coming out and will make sure she gets your attention when she wants it! She is imitating more sounds and gestures and will say "uh oh" and play "So Big!" It's so easy to get her into a rolling laugh just playing some silly games, and she loves to snuggle with you and her blanket. I forgot how much fun this age can be. She has in her own way brought sunshine into my wintery heart.

Ashlyn In Motion

2010-03-09T11:40:00.002-05:00

In Memory of Mom

2010-02-26T13:27:00.003-05:00

Forever with the Lord

Forever in my heart

2010-02-09T14:23:00.001-05:00

Pictures...

2010-01-12T14:39:00.004-05:00

Christmas Day 2009

Christmas Eve

My Pretty Girl

Ashlyn with her Great PopPop

Big Brother Branden loves to play with my feet

Ups and Downs

2009-12-17T14:12:00.007-05:00

Ashlyn has had her ups and downs these past weeks. She was sick in October after her G tube surgery, then had an ear infection and then had a reaction to the antibiotic for the ear infection. We finally got her appetite back the week of Thanksgiving. It's nice when she eats and drinks her yogurt from the sippy cup because then I don't have to give her a feeding. This week she came down with another sickness and was vomiting and not eating for two days. She finally seems to be feeling better today, but her appetite is not 100% yet. I've resigned to the fact that things will always be up and down with good days and bad with Ashlyn and her eating...and sleeping. Some nights she sleeps all the way through and some nights she wakes frequently. Her weight has just kind of been hovering around the 18 lb mark lately. At her visit to the cardiologist last week she was 18 lb 1 oz. She is more active though. She really wants to move around is just starting to figure out how to get from lying down to sitting. She gets occupational therapy once a week, but we are going to add physical therapy too to get her progressing little faster.

As for my mom...she is doing very well right now, and I want to thank everyone who has been faithfully praying for her.

Photo by Gilmore Photography

Feeling Thankful...

2009-11-29T12:53:00.003-05:00

For every good and perfect gift from above

For the sparkle in my son's eyes

For every life-giving beat of my daughter's heart

For the circle of love that embraces us
Through each treasured moment with family and friends

For the strength to give thanks in every circumstance

For the hope that comes from knowing Him

Pray for Nonni

2009-11-10T14:47:00.003-05:00

Please pray for my mom, who many of you know has been battling metastatic breast cancer. Our family has been through some tremendous trials in the past four years, and this year has brought the worst we've experienced. In July we discovered that the breast cancer diagnosed and treated four years ago made its way to the bone. It turned out to be an aggressive cancer that continues to spread and just last week the doctors gave my mom a very grim prognosis. We are not willing to give up on her though, and we know that God is much greater than any disease. He gives hope in even the most hopeless situations. I am asking for your prayers. God has already proven himself faithful even just through Ashlyn's life. He is able to do more than we can ask or imagine.

2009-11-03T16:39:00.002-05:00

Lord, Our hearts are breaking. I feel such an oppression blanketing my heart like the gray clouds that keep hovering in the sky. You promise good things to those who hope in You. I can only hope for a miracle that you will heal my mom of the cancer that is aggressively taking over her body. I can't trust in doctors or medicine or alternative treatments or pink ribbons. The only thing worth trusting, worthy of hope is You. I'm so lost for answers but the one thing I do know is that Your faithfulness is great and Your compassion never fails. Show us new compassion in the morning or I will not be able to face the day.

At Home

2009-10-23T11:31:00.003-04:00

Ashlyn was discharged yesterday and we are now settled at home. She is doing great with her new button, and we all love having her face back! She has her appetite back and is back on her normal feeding schedule and tolerating everything fairly well. The button still has a dressing around it, and I can take that off in a few days. It's still a little bit sore when I take the extension tubing on and off, so I'm trying not to do that too much. It should be mostly healed in two weeks, and we're hoping for no infections during the healing process.

Ashlyn hasn't been sleeping well the past two months, and I have been unable to figure out what is making her wake up. She is definitely not as congested at night like she was with the NG, and last night she only woke once. This morning I noticed a new tooth, so maybe it's related to teething. Now that we are home and settled, I have to take on the endless task of catching up on housework and laundry that's been left untouched the last few days, so if you happen to be at our house in the near future, you might not have a place to sit!

At CHOP

2009-10-21T09:24:00.004-04:00

Ashlyn had her Mickey button put in yesterday morning. Everything went well, and there were no issues or complications with the surgery or the anesthesia. I didn't realize how painful she would be afterward. We use our bellies for everything...and every time she would cough, cry or move she would be in pain. She had a fairly restful night though and seems to be much more back to her old self today. She has a foley bag attached to the tube right now to relieve any pressure, but today it will get clamped off to see how she tolerates it. She should also be able to begin eating this afternoon and start receiving feeds through her new button tonight. Tomorrow morning Eric & I will go to class to learn how to use it and take care of it. If all goes well I'm hoping she will go home by Friday. Thanks to you all who have been keeping her in your prayers!

G Tube Surgery

2009-10-04T19:21:00.003-04:00

The month of September was a challenge. In the beginning of the month Ashlyn had a double ear infection. Then she had a cold, got another tooth and had diarrhea for 2 weeks. All this had seemed to set her back with her eating and development (and our sleep!), but it seems she is eating better and even starting to drink from a cup better. She's also started using her little arms better to stabilize herself. Because of her reflux issues, she has a tendency to arch backwards. She gets occupational therapy once a week, and now we are trying to break that habit and teach her to lean forward instead.

Her echo with sedation had to be postponed because of the diarrhea, but this actually works out better. Her G tube surgery is set for October 20, and she will get her echo while under anesthesia for that. This way she doesn't have to get sedated twice. I'm a little nervous about the surgery, but it should be a relatively simply procedure with minimal blood loss and quick recovery...nothing like open heart surgery. She'll have it done at CHOP and be there about two days to make sure she can tolerate her feedings through the new G tube. It's going to be a while before she will actually take by mouth what she needs to really grow, and it will be much less frustrating for all of us.

Celebrating One Year

2009-09-18T17:05:00.002-04:00

Ashlyn just turned a year old on the 16th. It's hard to believe. I can't explain how Ashlyn has changed us. Here's looking back on her life...

Make a Smilebox slideshow

2009-09-06T22:35:00.000-04:00

Frustration...

2009-08-27T16:37:00.006-04:00

Any parent with a child with an NG tube knows how frustrating it can be, and we have decided that's it's time to move forward with getting a G tube. It looks like Ashlyn will need tube feedings for a while yet, so we feel this is the right call. Last night the tube came out about four times, and of course each time I put it back in, Ashlyn gets more upset. On some occasions inserting the tube might make her gag and throw up anything that's in her stomach. On top of that the tape on her cheeks is just not good for her skin. Sometimes she doesn't get the entire feed because the tube comes out so much. One morning her bed was soaked with formula because the tube came out in the middle of the night. Ashlyn was weighed at her feeding appointment yesterday, and even though she is almost 17 lbs, she dropped from the 5th to the 3rd percentile. Her appetite seems to be picking up lately, but she still needs the fluid. I have been thickening the formula and offering it to her by cup, but she's not really getting the hang of it yet. I just really started trying that though.

Ashlyn and I spent the day in King of Prussia yesterday. In the morning she had an upper GI study done with barium, and in the afternoon she had her visit with the feeding team. (In between appointments we had fun shopping at the mall : ) The GI study showed that she has no malrotation (something the GI doc wanted to rule out to make sure it wasn't causing the reflux issues), but it did show that the colon is in front of her stomach. Because of her anatomy she will have to have a surgical procedure to have the tube placed. (In some cases they can put the tube in percutaneously, and it doesn't require surgery). So from here we need to have an initial visit with a CHOP surgeon who will advise about what kind of tube she will have and then schedule the surgery. Unfortunately he doesn't have any appointments available until the end of September, so I went ahead and scheduled it for Sept. 30. I guess we will be struggling with the tube for a while : ( So who knows...maybe by then she will just decide that she loves drinking formula! It wouldn't hurt to pray.

On a more positive note, we now have a 4-year-old who has been using the potty very well!! : )

Branden celebrated his fourth birthday at Chuck E. Cheese

Sick Today

2009-08-12T10:16:00.008-04:00

Ashlyn has a bad cold today, so I had to cancel her visit with the Feeding Team. It's never fun when your child is sick, and a tube in the nose makes it so much worse! She is taking more baby food, but I would really like to see her eat more. She does take about an ounce of baby food or thickened formula by cup. Yesterday brought me closer to wanting that G tube. The NG tube came out three times, and she struggled so much to get it back in. I really hate making her get so upset. I can't blame her for wanting to take it out. She is down to three feeds a day but still has her continuous overnight feeding. It might be a while before she can be free of tube feeding, but a G tube just seems so much more permanent. This is our next major decision for Ashlyn.

She is generally such a good girl, and she enjoyed her time in the park yesterday with her big brother Branden and cousins. We've been able to adjust our lives around her tube feedings. It's become a part of all of our lives. Branden loves his little sister and likes to play with her and "help out" in different ways. He has handled everything this past year so well, but he still is not potty trained. He will be 4 next week. It's been very difficult for me to take care of Ashlyn as well as devote the time that's necessary to potty train him. That is our next major goal right now!

(From L to R) Ashlyn, Stephen, Branden, Reuben and Jared

Feeding Appointment

2009-07-15T10:24:00.003-04:00

Ashlyn saw the Feeding Team again last week. She now weighs 16 lbs!! She is allowed to have baby food three times a day, and we are not increasing her formula this time. She can have biter biscuits, and she enjoys being able to feed herself. She is almost sitting up by herself and rolls over very independently. I scheduled an appointment with a GI specialist for July 31 to talk about possibly placing a G tube for her. We're not quite ready to make that step yet, but since she's probably going to be dependent on tube feedings for a while, it's something to start discussing. Please pray that God will give us wisdom in this area.

9 Months Old

2009-06-27T14:35:00.001-04:00

Getting Stronger

2009-06-12T21:41:00.005-04:00

I've really noticed that Ashlyn has been getting stronger lately...especially this last week since I started putting her in the walker. Her swallow study on the 5th went well. She took a bottle and drank from a cup for the study. However, the study showed there is only minimal improvement with the aspiration issue. For her it seems to be a problem with coordinating sucks, swallows and breaths, and it will take her more practice and more time. So for now she can continue eating the baby food but will continue to get tube feeds for her formula. Now she is starting to practice drinking from a cup so that she can have that skill mastered by the time she is safe for thin liquids. Tube feeding can be inconvenient, but we are so used to it now that it has become a part of our lives. We were able to get away for a few days earlier this month with no problems.

Yesterday was Ashlyn's echo and visit with the cardiologist. Her echo showed that her right ventricle is still looking a little sluggish so she will stay on her heart meds for now. At her next visit in September she will be sedated to get a more thorough look at everything since it will be six months out from the surgery at that time. She'll need sedation because as she gets older and more mobile it gets more difficult to get a thorough ultrasound of her heart.
When I see how happy and playful she is each and every day, it's easy to forget that only half of her heart is functioning, and when I think about it I realize how much God wants her to be here.

June Schedule

2009-05-28T09:30:00.004-04:00

Ashlyn has several appointments next month:

June 3 Feeding Clinic in King of Prussia
June 5 Barium swallow study at CHOP
June 11 Echocardiogram & visit with cardiologist
June 16 Nine-month checkup with pediatrician

She is really growing and now weighs 14 lbs 8 oz. She loves her baby food and eats about 8 oz a day. I can't wait until we can let her take liquids by mouth, especially since she pulls her tube out once or twice every day. Please pray that these appointments go well and particularly that she will do well on her swallow study. Thank you for caring about Ashlyn! She is really an amazing baby that is happy and content most of the time.

Happy Mother's Day!

2009-05-12T11:08:00.003-04:00

Make a Smilebox slideshow

Enjoy pictures from Ashlyn's dedication and more. Happy Mother's Day to all moms for the sacrifices you make every day...and an extra special wish goes to all "heart" moms because you make a few extra sacrifices.

Ashlyn has no scheduled doctor appointments for the month of May! Next month she will see her cardiologist, the feeding team and her pediatrician. Hopefully her swallow study will take place in June also. Please join with me in praying that she will pass this time.

Spring

2009-04-20T15:06:00.003-04:00

It's been a long winter of isolation, but now the warmer weather is finally starting to show its face. Hopefully there aren't as many sicknesses flying around, and we have started taking Ashlyn out more and more. She has been to church twice now and seems to love being around a lot of people.

Ashlyn with her newest cousin Tyee (pronounced "Tie")

She can't sit up by herself yet, but it's exciting to see her get stronger each week. She is starting to seem a lot less fragile. She even managed to roll over from her back to her belly all by herself once.

"Know therefore that the Lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands." Deuteronomy 7:9

Adventures With Ashlyn

2009-03-27T09:30:00.002-04:00

Co-pays, insurance, prescriptions, doctor visits, specialists, hospitalizations, unexpected trips to CHOP...this is life with Ashlyn. Last night we were in the CHOP ER with Ashlyn. It started out as a routine checkup and vaccines at her pediatrician's office yesterday afternoon. She woke up in the morning with some cold symptoms and felt a little warm. She ended up having a fever of 101 and a pulse ox of 72 (I think she was just upset). Her pediatrician called the cardiology department at CHOP, and they recommended we come down to the ER to make sure she didn't have pneumonia. After some rush hour traffic and rainy weather, we got there after 6, and the ER was packed. All I had to do was say she had hypoplastic left heart, and they took her back right away. Her pulse ox was 80 (normal for her), and her fever had come down to 100.3. They did a chest x-ray, and her lungs looked clear. Then we finally took her home and got back around 10:30. I was a little surprised they even wanted us to bring her, but I guess for a heart baby that had major surgery six weeks ago, a little fever is a big deal. Thanks to all who were praying for her last night!

*****

This past Wed. Ashlyn had her visit with the feeding team (speech therapy, occupational therapy, dietician and gastroenterologist). I'm a little disappointed that we didn't schedule her swallow study, but the speech therapist didn't feel that Ashlyn would pass right now, so there is no point in radiating her until they see how she is in six weeks. There are no openings for another appointment with the feeding clinic until June, so it looks like Ashlyn will be getting tube feeds for a while. The team was very pleased, however, with her growth and with how well she is eating baby food. They were able to answer a lot of the questions that I had. Now that she is six weeks post-op, her breast bone should be healed, so there are less restrictions with her activity. The focus right now is to get her to develop better trunk control. Once she is able to sit up better, there should be improvement with the reflux and hopefully also with her ablility to swallow.

March 27

2009-03-27T09:21:00.006-04:00

Ashlyn

March 27, 2009

Ashlyn's Mommy

March 27, 1977

Echo

2009-03-21T15:52:00.004-04:00

Ashlyn had another echo at CHOP this past Wed. The echo looked good enough for her cardiologist to decide to start weaning her off of her Lasix. In a couple weeks she should be completely off of it. I'm excited that she will soon be on one less medication! She is also on two other meds for her heart, two for reflux, and aspirin every other day to prevent clots. Eventually she will be off of the other heart meds, but that will be down the road. Most of the meds are just twice a day, but one is three times and one is four times a day. Ashlyn keeps me quite busy! She can go two months until her next follow-up visit with the cardiologist.

This week on March 25th Ashlyn has an appointment with the Feeding Clinic. She is long overdue to go to the Feeding Clinic. I'm hoping to get a lot of my questions answered and to schedule her swallow study.

6 Months Old

2009-03-15T15:58:00.002-04:00

A Picture Journal

2009-03-11T15:02:00.007-04:00

Before Surgery

Day After Glenn

"For I know the plans I have for you," declares the Lord...

Recovering

"plans to prosper you and not to harm you...

Happy At Home

"plans to give you hope and a future."

Jeremiah 29:11

Doing Well

2009-02-25T11:08:00.002-05:00

Ashlyn is doing well, and her incision is healing nicely. Yesterday she had a follow-up appointment at CHOP along with an EKG and echo to see how her heart is functioning. Everything looks good. She also had a chest x-ray because her cough has seemed to get worse over the weekend. Her lungs are clear though and it's probably just related to a cold she is getting over. She had some sneezing, a runny nose and a slight fever on Sunday night but seems back to her normal self now. Her next cardiology appointment will be in about a month.

One thing about being at CHOP is that you get to meet parents who are going through similar situations as you. We met a few parents yesterday who have had the whole NG tube experience...fishing it back into your child's nose after she's pulled it out numerous times and at the most inconvenient times. My next major prayer request for Ashlyn is that she will get the OK to take liquids by mouth soon. The earliest this could happen would be the beginning of April after another swallow study. I'm just going to keep praying her through each step!

Home

2009-02-17T10:17:00.003-05:00

Ashlyn was discharged from the hospital yesterday afternoon. I believe that prayer played a powerful role in her recovery process. She was in the hospital for six days. This morning I gave her eight different meds and made phone calls to order her feeding supplies and schedule her appointments for next week. She still seems to need the pain meds, but after they take effect she is very happy. Her care is still very time consuming, but her smile seems to make it all worth it.

This was Ashlyn on the way home from the hospital yesterday.

Day 4

2009-02-14T21:07:00.004-05:00

Ashlyn was very happy today and had a good appetite. She is off of oxygen and has been doing well. This afternoon she had an echo, which showed that her heart is not pumping as optimally as the cardiologist would like. She was started on a new medication, Captopril, and she will need to have her blood pressure frequently monitored as they find the right dose for her. This finding on the echo is commonly seen after this surgery, and most kids respond well to the medication. She can go home in about two or three days when the dosage has been figured out.

Day 3

2009-02-13T22:52:00.002-05:00

Ashlyn mostly wanted to sleep today. The fluid in her left lung seems to subside a little each day, but it will take time. Her IV Lasix was changed over to oral. The nurse will try to take her off of oxygen tonight and see how she does. Tonight her Daddy came to see her, and as soon as he walked into the room she had a huge smile for him and starting cooing.

Day 2

2009-02-12T20:51:00.004-05:00

Ashlyn was much more like herself today and more alert. She preferred to be held and rocked most of the day and seems much happier after the pain meds are given. She is tolerating her feeds nicely and had a few bites of baby food. The x-ray this morning showed that the fluid in her lung is subsiding, and I noticed she coughs less too. She still has oxygen but is on a very low concentration, and her pulse ox number rose above 80 a lot today. The bandage was taken off of the long incision on her chest. It will be two weeks before she can be on her belly again and about eight weeks before we can pick her up under her arms. This evening she was moved to CCU and has her own private room.

One Day Post-Op

2009-02-11T23:18:00.003-05:00

Ashlyn is recovering well. The chest tube, arterial line in her hand, and the atrial line into her heart were all taken out today. She was also taken off sedation medication and morphine and is now just on oral Tylenol and oxycodone for pain. She is being weaned off of the oxygen too. Her oxygen sats are now between 75-80, and her heart rate has been in the 120's. Her chest x-ray showed a small amount of fluid in her left lung, so she is on Lasix for that. She coughs sometimes when she is awake, and she cries a little after coughing. I can hold her now, but it takes a while for her to get settled into the new position. As expected her head is a little swollen today. She is back on her normal feeding schedule again, but she did spit up her afternoon feeding after a coughing spell.

I'm amazed at how quickly things are moving. She is supposed to move out of ICU tomorrow and be transferred to Cardiac Care. Even more amazing is that she cracked a few smiles today! She still has quite a bit of recovery time ahead though, and her body has a lot of healing to do. She still seems so fragile right now but mostly comfortable. Pray that the fluid in her lung won't get any worse.

Stage 2 Complete

2009-02-10T19:49:00.004-05:00

Ashlyn had her surgery this morning, and everything went well. Her surgeon, Dr. Spray, said that it took a little while to get through some of the scar tissue that was present from the previous surgery, but the waiting time didn't seem too long. Our pastor stayed with us most of the day today, so that really encouraged us. Also, Ashlyn has two superior vena cavae instead of one, so both had to be connected to the pulmonary artery.

I'm so thankful for the medical caregivers here at CHOP. Ashlyn's nurse is very attentive to managing her pain. She is mostly sedated right now to keep her calm, but there will be some painful days ahead as her body again adjusts to the new blood flow pattern, which can cause swelling of the head and headaches. She has a chest tube, which looks painful to me, but hopefully the tube can come out tomorrow. She will have a chest x-ray done every morning to make sure there is no fluid collecting in the lungs.

She is able to wrap her little fingers around one of mine, but she has not opened her eyes. I was told that tomorrow she will be more alert and probably fussy, so I should get plenty of rest tonight. I wish I could be next to her all night, but I know that God has angels under His command who are lifting her up in their hands. What better care could she have?

As we were leaving the hospital tonight, I saw someone I went to high school with (years ago) leaving also. She is expecting a boy with a heart defect. Please pray for her baby too. His name is Isaiah.

Surgery Next Week

2009-02-04T17:36:00.002-05:00

It's hard to believe it's almost time for Ashlyn's stage 2 heart repair...in medical terms called a bilateral superior vena cavopulmonary anastamosis! How do you like that one? Ashlyn had a very long and exhausting day yesterday with her preadmission testing, but she did well and slept the whole way home from CHOP. Next week Eric, Ashlyn & I will head down to Philadelphia on Monday and stay at the Ronald McDonald House (hopefully) so we can be close by to take Ashlyn right over to the hospital on Tuesday for her surgery. The surgery will take about three hours, and she will stay in the hospital for five to seven days as long as there are no complications. I'm nervous about my baby having open heart surgery again, but I am also looking forward to good results after her recovery.

Getting Baby Food

2009-01-27T16:25:00.003-05:00

Eating Baby Food

2009-01-25T19:45:00.003-05:00

Ashlyn did great on Thursday. First she saw the ear, nose & throat doctor. He looked at her vocal cords with a fiberoptic camera and told me that they have improved! We've also noticed that her breathing is a little less noisy than before. Later she had her barium swallow using flouroscopy. She would not take the bottle, but the speech nurse fed her the barium using a spoon. The study showed that she was able to handle the honey-thick substance without aspirating, but she did aspirate the thinner substances. We will still be giving her feedings through the NG tube, but she can now have baby cereal or stage 1 baby food twice a day to introduce her to some oral feeding. I'm excited to finally be able to give her something by mouth, and she seems to really like it!

Surgery Date

2009-01-19T16:31:00.002-05:00

Ashlyn's surgey has been scheduled for Feb. 10. The week before she will have preadmission testing done including bloodwork, EKG, echocardiogram and a chest x-ray. (That will be a long day so pray for her on Feb. 3). The Hemi-Fontan or Glenn procedure involves connecting the SVC (superior vena cava) to the pulmonary artery so that the blue blood from the head, neck and upper body flows directly into the lungs for oxygen. The little shunt will be closed off, so we won't have to worry about it clotting anymore. There is some risk of complications, and she is at greater risk because of the Turner's Syndrome. Her cardiologist informed me that they just don't see HLHS and TS together too often, but history has shown that those with Turner's often do have more complications. One of the main complications would be fluid collections around the heart. She also has the vocal cord issue which could be aggravated by another intubation for surgery. I would really appreciate all of your prayers through this phase of Ashlyn's journey. I think she has been through the most critical part, but she really needs to get through this next part without complications. I will post the results of her swallow study on Thurs. Thanks for praying!

Looking Back...Looking Ahead

2009-01-08T16:07:00.006-05:00

The year 2008 was definitely the most challenging year of my life. I spent most of the year pregnant, and the last half left me feeling very emotional and uneasy with not knowing what to expect. There is still a journey to travel ahead, but we have covered a lot of ground already and have found blessings in the midst of the valley. I will never forget June 2, 2008, the day I came to realize there was something wrong with my baby's heart. At first it was hard to understand why God allowed it to happen and how it could fit into His master plan. I won't be able to see things the way God sees them in their truest perspective, but I have learned that sometimes we have to go through pain in order to achieve something greater in the end. When He sends us through the fire, what's left when we come out of it is who we really are. I have been encouraged by something I read from a devotional book my sister gave me for Christmas. God "will not remove the gold from the crucible until all the dross has gone, and you are taking the glorious shape of your true self which His eye alone has foreseen." During the pregnancy someone told me that I had to be a pretty strong person to go through something like this. In reality I am not the strong one, but God is, and He gives me just enough grace to handle life one day at a time.

Today Ashlyn had another cardiology follow-up appointment at CHOP. At this point it looks like her second surgery, the Hemi-Fontan procedure, will be in about six weeks. This puts us at the end of February. Before then, however, Ashlyn is scheduled for her swallow study on January 22 to see if she can take the bottle again.

Praise God for the many people who have blessed us this Christmas with generous gifts of support and encouragement and for Ashlyn's continued growth and smiles.
Please pray for Ashlyn's oxygen sats to hold in the low 70's as they have been until her surgery at five months old and for good results from her swallow study.

"We set our eyes not on what we see but on what we can't see. What we see will last only a short time, but what we can't see will last forever." 2 Corinthians 4:8-9

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty." Psalm 91:1

Ready For Game Day

2009-01-06T11:52:00.003-05:00

All Smiles

2008-12-13T21:22:00.002-05:00

Ashlyn really is a very good baby. She started smiling a couple of weeks ago, and she sleeps very well through the night. She still has some reflux issues along with congestion and coughing. She had an appointment with the Nutrition Clinic at CHOP, and the feeding team there made some suggestions to help with the spitting up. We're slowly making some changes to her feeding routine, medication and formula to see what will help her. She is gaining weight though, and this past week at her cardiology follow-up she weighed 9 lbs 7 oz. As of now she is not scheduled to go back to CHOP until January 9.

I can't believe she is almost three months old already!

Happy Thanksgiving!

2008-11-26T18:14:00.003-05:00

Ashlyn is going home tonight! Her swallow study this afternoon showed that she is aspirating some of her milk when taking the bottle, even with thicker fluids. This aspirating could be contributing to the cough/congestion she has been having. Her vocal cord paralysis is making it difficult for her to protect her airway while feeding, and she also has a delayed cough response when this happens. Unfortunately this means that it is unsafe for her to take the bottle, so for the next two months she will be getting NG tube feeds only. Then she will have the test repeated to see if there is improvement and if we can start up the bottle feeding again. In the meantime we will have to keep her orally stimulated with the pacifier. Ashlyn will be coming back to CHOP quite frequently in the future, not just for cardiology appointments but also with the Feeding & Nutrition Clinic as well as the ear, nose and throat specialists.

On a positive note she is going to be getting a continuous feeding at night, which will require getting up only once at night. She is a great sleeper at night, so I think this will work out very well. Her caloric intake was decreased from 27 to 24 cal/oz (but increased in volume), and this seems to be helping with the vomiting and spitting up since her milk/formula is not so rich now. It's still on trial though, and I'm hoping that her weight gain over the next week will be adequate enough to keep her on this.

May you all have a wonderful Thanksgiving. I am so thankful for Ashlyn's life. She has been such a trooper through all of this.

Bronchoscopy Today

2008-11-24T12:31:00.003-05:00

Ashlyn had the bronchoscopy procedure early this morning, and it took less than an hour. The doctors decided that they did not want to wait to find out what is causing the stridor, or noisy breathing, since it can interfere with her feeding. The bronch showed that Ashlyn's right vocal cord has paralysis, but I was told that this would get better eventually. She is also going to be getting a barium swallow done tomorrow or Wed. She has been handling all of this testing very well. Hopefully she will be discharged before Thanksgiving.

Good Results

2008-11-21T14:05:00.002-05:00

Ashlyn had her cardiac catheterization done this morning and is recovering nicely right now. In spite of what was seen on the echo on Wednesday, today's procedure showed no obstruction or narrowing of the shunt. She does have some upper airway noisy breathing and congestion issues, so she will be monitored over the weekend and possibly be sent home on oxygen to give during those episodes. While she is under anesthesia during her next surgery, she may have a bronchoscopy done to get a better look at what is going on in her airway. Praise the Lord that there were no complications during the cath and that the shunt is fine!

At CHOP

2008-11-19T16:33:00.004-05:00

I'm writing this from Children's Hospital in Phila. Ashlyn had another cardiology appointment this morning and an echocardiogram. It appears that the shunt in her heart might be a little more narrow than what was seen on her last echo. (Keep in mind that the shunt is only 3.5 mm wide and is her only way of getting blood over to the lungs). Normally a cardiac catheterization would be done around 3-1/2 months old, but due to today's findings Ashlyn was admitted to the hospital again, and the cardiac cath will be done tomorrow (hopefully) or Friday. She cannot have her second surgery any earlier than 4 months old, so pray that her shunt will be OK until then. I will give more info once we have the results of the testing. She is now resting very comfortably with her oxygen saturation levels holding around 75% (when she is stressed, it dips down into the 60's). Thank you for your fervent prayers.

Two Months Old

2008-11-15T17:47:00.002-05:00

Update & Prayer Requests

2008-11-02T17:42:00.002-05:00

Ashlyn had another cardiology follow-up appointment on Friday, Oct. 31. Her weight is now 7 lbs 15 oz, which is a good weight gain. Her oxygen saturation levels are still in the 70's, so her next surgery (usually done between four and six months old) will be done sooner rather than later. Around 3-1/2 months she will have a cardiac catheterization done to get a good look at the vessels around the heart.

I wish I could say she is making progress with the bottle, but she still often gets half or more of her feeding through the NG tube (except with Grandmom, who seems to be able to get her to take the whole bottle). With her weight gain we have to give her more milk with each feeding, so the feedings take that much longer. If we can gradually work her up to a certain volume per feeding, we can go longer at night between feedings, but for now she is still on a strict every-three-hours feeding schedule.

Pray that Ashlyn will make better progress with the bottle and pray that she doesn't contract any illnesses during the cold season. Pray for strength for Eric and myself...we are so tired!

Back Home

2008-10-25T19:38:00.005-04:00

Ashlyn came home yesterday afternoon and did not need a blood transfusion. She has some reflux issues, so she is now on another medication for that. It is a lot of work keeping up with her feedings and medications and pumping out milk in between. It can be exhausting at times, but we have been shown so much support from family and friends who have been bringing meals, picking up groceries and diapers, and helping out at home. It's all worth it to see her gaining weight and thriving. I can't wait to see what God will do in her life as she grows up.

Back to CHOP

2008-10-23T21:41:00.002-04:00

It has been ten days since Ashlyn came home from the hospital, and this afternoon she had a follow-up cardiology checkup at CHOP. She has gained weight and is above her initial birth weight, and she looks great. However, when her oxygen saturation levels were tested, they were in the 60's and 70's, and the cardiologist just did not feel comfortable sending her home without more testing and monitoring, so now she is back in the hospital for tonight. Some blood was drawn tonight to check her hemoglobin. If it is low she may need a blood transfusion. She is resting comfortably now, and her pulse-ox stays between 70-80, which is good. The doctors hope to discharge her before the weekend.

My grandfather passed away this morning, and I hope to attend his funeral on Monday. He was 94 years old, and he will no doubt receive a rich welcome into God's kingdom.

Home

2008-10-14T13:07:00.001-04:00

Ashlyn came home on Monday, October 13!

Angels' Wings

2008-10-12T19:20:00.002-04:00

When you open up your eyes

Do you see the angels' wings

Shielding you, touching you?

Do you feel the warmth they bring?

Do they flutter loudly

Or hum softly overhead?

Do they extend out toward each other

Encircling your bed?

Do they glimmer in the darkness

Bringing brightness from above?

Do they cradle you with healing

And blanket you with love?

Do they scoop beneath to capture

Each tiny fallen tear?

Do they brush against your forehead

When I just cannot be near?

Do they play for you on instruments

Heavenly lullabies?

Do they plant the seeds of all your dreams

And promises in your eyes?

God's angels are around you with

Their wings unfolding in His light

So sleep in peacefulness, my child,

Rest with no cares tonight.

Going Home Friday?

2008-10-08T19:08:00.002-04:00

I hesitate to say that Ashlyn will be going home this Friday, but if all goes well that is the plan. She spiked another fever yesterday morning, but it hasn't returned, and all of her tests came back normal so far. The doctor would also like to see two consecutive days of weight gain before letting her go to make sure her nutritional needs are being met. Yesterday her weight dropped, but today she gained, so if she gains weight tomorrow and doesn't have any more fevers, she will go home Friday. We are so ready to bring her home, but we also want everything to be right before taking her home. She also has been taking more of her bottle with each feeding, about half and sometimes even more. Her heart rate has always been high, and this could be why she burns up so many calories. Thank you all for consistently thinking of little Ashlyn...

Not Home Yet

2008-10-04T13:32:00.002-04:00

The day of Ashlyn's discharge keeps getting pushed back. Last Wednesday she spiked a low fever, but it has not returned. I just spent the last 24 hours with her, feeding her every three hours and taking care of the NG tube, so that I know what to do at home. She was supposed to go home tomorrow, but she has not gained weight. The doctors want to make sure she is getting enough calories and gaining weight before sending her home. They've also started her on a new heart medication, so they want to monitor her blood pressure for the first few doses. She has been taking the bottle most every feeding, but after about a third of it, she gets too tired to finish the rest, which is given through her NG tube. Please pray that she starts gaining weight so that she can go home on Monday as planned. Also pray that she gains the strength needed to take more of her feeding through the bottle.

Making Progress

2008-09-30T23:11:00.003-04:00

The past few days have been a process of condensing Ashlyn's feeds from continuous through the NG tube to feedings given over one hour. This afternoon Ashlyn took half of her whole feeding through a bottle and the rest through the NG tube over about 40 minutes, and she tolerated this very well. She was moved out of ICU to a step down in the Cardiac Care Unit. Pray that Ashlyn continues to take more and more from her bottle. We are hoping she can come home later this week.

Ashlyn's Busy Week

2008-09-30T22:53:00.005-04:00

Holding Ashlyn just before surgery on Monday

First bottle after surgery

One week post-op: First time wearing clothes!

Two weeks old

More Good News

2008-09-26T15:11:00.003-04:00

Ashlyn has been recovering amazingly well. She hasn't been taking quite as much with her bottle, but she is getting the needed amount of breast milk through her nasogastric tube. She is now completely off of IV nutrition, and today the nurses started fortifying the milk with some formula to give her the extra needed calories. The speech nurse comes once a day to work with her sucking and swallowing to help her to take more from the bottle. Ashlyn is completely off of the oxygen and is just breathing room air, and this afternoon the surgical team is coming to remove the lines from her chest (pacer wires and a line out of her heart). This is exciting because now we will be able to take her out of her bed more, which should hopefully also help with taking the bottle a little better. Eric & I have classes scheduled for Monday and Tuesday next week for CPR and for NG tube placement and care because she may need to come home with the NG tube. If all continues to go well, she may come home Tuesday or sometime next week!! I can hardly believe it because I was told she would be here for at least three weeks after her surgery. Her incision started oozing just a little bit today, but we're just keeping an eye on it for now. God is our Healer, Jehovah rapha, who can heal our physical bodies as well as our sin-sick souls.

Taking a Bottle!

2008-09-24T16:49:00.003-04:00

Ashlyn looks much more like herself today and is more alert. When she opens her eyes I wonder if she can see God's healing angels around her. Some of the swelling has come down, and the umblical line going into her belly button was pulled out. Today for the first time a bottle of my milk was introduced to her. At first she was just too sleepy to be interested, but we tried it again later, and she drank about three-quarters of an ounce or about 22 ml. All the nurses were amazed! Most babies at this stage don't figure out the sucking and swallowing this quickly. As she takes more milk the IV nutrition will be backed off gradually. She still has some lines coming out of her heart and out the chest. Once these come out we will be able to hold her out of the bed and even put clothes on her. She is still getting some oxygen via a nasal cannula. This is also being backed off as much as she can handle. Branden got to see Ashlyn again today. When he saw the incision on her chest he said, "Ashlyn has a boo-boo." The bandage came off the incision last night. It looks red from the tape, but the redness has improved throughout the day today. Ashlyn's cardiologist came by to see her today as well, and she was very pleased with her progress. Today has been a good day, and she is one day closer to coming home with us.

Surgery Successful!

2008-09-23T11:34:00.004-04:00

Ashlyn had her surgery yesterday, and all went well. Ashlyn's surgeon spoke with us before and after the surgery, which took about three hours. Now her body needs to get used to having a new pattern of blood flow. The first 24 hours are the most critical, but so far she is handling everything very well, and the nurses are keeping her very comfortable. She is such an amazing baby! There are a lot of things coming out of her body, but gradually those things will go away. Her urinary catheter and chest tube were pulled this morning, and later today the breathing tube and suction tube will come out of her nose. She is resting so nicely this morning, we didn't want to disturb her so we only visited with her a short time. We will hang out here at the hospital today and be checking in on her, at least until the 24-hour time frame has passed. Please pray that there will be no complications in the upcoming days. In the first Norwood procedure, a small tube is put in to connect the right and left sides of the heart. This will get taken out in the second surgery between three and six months, but until then there is the possible complication that this could clot. Pray that this doesn't happen. Thank you all for your continuing thoughts and prayers.

Surgery Tomorrow

2008-09-21T13:47:00.003-04:00

Ashlyn has been doing really well since birth. She has been a very laid back baby so far and is not as sensitive to sounds as she was the first two days. The swelling in her hands and feet has even improved the last few days. She has been getting IV nutrition and is on prostaglandins to keep her PDA open. She will not start receiving any of my milk until sometime after the surgery. Ashlyn is scheduled to be taken to surgery sometime between 11 am and 2 pm on Monday. We will be updated every hour or so by the nurse with how the surgery is progressing.

It has been very difficult for me to leave Ashlyn there in the hospital each day, but I know she is getting the best medical care she could receive. CHOP has the largest cardiac ICU for children than anywhere else in the world. I know that Ashlyn is doing so well because of all of your prayers, so thank you! They really make a difference.

Thriving

2008-09-18T21:12:00.005-04:00

Today I was discharged and it feels good to be home with Branden and Eric again. There were some scheduling changes, and Ashlyn's surgery was postponed until Monday. Ashlyn looked very comfortable and peaceful today, and Eric & I both got a chance to hold her for the first time. Branden got to see her on Tuesday night but was more interested in the elevators than in his baby sister! We are trying to keep his schedule as normal as possible for him. We will be going to CHOP each day to visit Ashlyn. We are pleased with how well she is thriving and are thankful for the care she is receiving. God's mercies are new every morning, His compassion never fails and His faithfulness is so great.

Pictures

2008-09-17T16:46:00.003-04:00

Here are some pictures taken of Ashlyn from my cell phone. Above is just about an hour after birth.

Below is several hours later. She is always sleeping when I go to see her.

She's Here!

2008-09-17T15:40:00.004-04:00

I don't have a picture to post yet, but Ashlyn arrived just before 2 AM on Tuesday, September 16. She weighed an amazing 7 lbs 4 oz! She did really well after delivery and continues to do well in the cardiac ICU. Her first surgery is tentatively scheduled for tomorrow (Thurs the 18th).

How it all happened...
Early Monday morning between 1-2 AM I felt some consistent contractions. Since we're not exactly right around the corner from CHOP, I was told not to wait too long if this happens, and the on-call doctor told me to go ahead and come in. By the time we arrived, however, the contractions stopped, and after being monitored for a little while, I was discharged. Before we left the doctor wanted to go ahead and do an ultrasound scan since we were already there, and she told us that Ashlyn's weight hadn't changed in the last two weeks and that there was no reason why I should wait any longer to have the baby. So I was admitted right back to the SDU and labor was induced. It was somewhat of a long process to get the labor started, but to make a long story short, I was able to have the normal delivery I had hoped for, and things happened relatively quickly once things got going.

What's more important is that Ashlyn tolerated the labor well and continues to do very well. Her color looks very good considering her heart condition, and like most newborns her main interest right now is sleeping. She is breathing room air and has not needed a breathing tube. I have not yet been able to hold her because it is very important for her arterial line to stay in place, but I will have the opportunity to hold her before she goes into surgery tomorrow.

I am writing this from CHOP now, and I should be discharged tomorrow. Thank you, everyone, for your constant prayers and encouragement. They lift us up each day. We have seen God's hand on her, and please especially pray for Ashlyn tomorrow while she is in surgery. I was told it would take between three and four hours.

37 Weeks

2008-09-11T17:53:00.003-04:00

Today's echocardiogram showed that the opening between the right and left atrium has stayed the same as last week, and the cardiologists are not expecting it to change before the baby is born, but it will be checked again next Thursday. This condition along with the Turner's Syndrome complicate Ashlyn's prognosis, but I am very thankful that this opening is not completely restrictive, which would complicate things even more. The cardiologists and OB doctors feel that it would be best for me to have a normal delivery at this point, and if I do not go into labor naturally before 39 weeks, I would be induced. Hopefully that answers the question for everyone who has been asking me when I'll have the baby. That means Ashlyn will be here sometime in the next two weeks!!

36 Weeks

2008-09-05T14:46:00.003-04:00

Ashlyn is now 5 lbs 1 oz as per the ultrasound at CHOP yesterday. I'm pleased with how well she is growing. We've had so many birthdays in the last month that Eric told me it must be all the cake I've been eating!

On the echocardiogram, however, there was a change in Ashlyn's heart noted. The opening between the right and left atria (foramen ovale) is very narrow, and since last month it went from 4 mm to 2 mm. Ashlyn responded very well to the oxygen again, and this is very good, but because of this change it makes her condition post delivery a little more unpredictable. Please pray that this opening does not close completely and that Ashlyn will do well the first few days of her life and be strong enough for her first surgery. Once she has the first stage of surgery, the foramen ovale will be opened up and this will no longer be a concern.

The Special Delivery Unit (SDU) at CHOP is quite impressive. This unit is brand new and just opened in June of this year. The SDU is the best place in the world for Ashlyn to be born. She will be delivered in one of two very special rooms that are accessible to an infant stabilization room. Once delivered, Ashlyn will be handed through a window into this room, and Eric will be able to watch through the window the entire time she is being worked on. Even once she is moved to CICU, I can just go down the hallway anytime to see her. The SDU was designed to allow parents to be close to their babies that need special care. I'm so thankful that it is available for Ashlyn.

It is hard to believe Ashlyn will be here in less than a month. Hopefully I should have more information about a delivery plan after next week's CHOP visit. Thank you all for your prayers and support.

Getting Ready for Ashlyn

2008-08-28T15:21:00.005-04:00

Ashlyn is head down and in proper position for a normal delivery. Today she weighs 4 lbs 11 oz, and the fluid levels continue to be normal. She even appears to be "breathing" as she is practicing for when it is time to breathe normal air and strengthening her lungs. The pregnancy is going well, and the baby is very active...if it wasn't for all the ultrasounds and tests, I would never know there was anything wrong. Considering that most babies with Turner's Syndrome miscarry earlier on, I believe that Ashlyn is an amazing miracle of life to have made it this far and to be doing so well. I can't wait to meet her!

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

A Growing Baby...

2008-08-14T14:00:00.003-04:00

A growth scan today showed that Ashlyn weighs 3 lbs 13 oz, which means she is in the 24th percentile for this stage in the pregnancy (33 weeks). She is still doing well and not showing signs of heart failure and hydrops. I will be getting steroid injections next week to help with her lung maturity, just in case she would have to be born a little early. She was in breech position today, but she moves around a lot and still has time to get back into the head down position which she usually is in. Hopefully I will be able to have a normal delivery as planned and not a C-section. Next week will be a very busy week for doctor appointments between everyone in the family, and three of them are for me and Ashlyn.

Today at CHOP

2008-08-07T18:04:00.002-04:00

This afternoon at the Children's Hospital I had an echocardiogram and an oxygen test, which showed how Ashlyn would respond to my receiving oxygen via a facemask for 15 min. The results were very good, and Ashlyn's reactivity was what the cardiologist wanted to see. I will have this test once again before the baby is born. This information gives the doctors a better idea of how to manage her right after her delivery. If she had not responded well, there might be more urgent care required after she delivers. Hopefully this means I'll be able to spend a little time to hold her before she is wisked down to ICU.

Eric & I were also able to visit the Cardiac ICU. It is disappointing for me to know that this is where Ashlyn will be spending her first few days and weeks of her life instead of at home with her family, but it is also good to know that the care she needs is available and right down the hall from Labor & Delivery.

We won't have to go back to CHOP until September 4! That day will be a long day as I will be having an ultrasound as well as an echocardiogram, and we will be meeting with the OB doctors, a lactation consultant and hopefully Ashlyn's heart surgeon. We will also be touring the Labor & Delivery Unit.

Hopefully I won't have much to report in the next few weeks. Please just continue to pray that God will prepare us for whatever His will may be and that we will continue to have peace in knowing that He has His hand on her life.

Ultrasound from Monday, July 28 (Profile)

2008-07-30T15:44:00.003-04:00

Looking Good

2008-07-24T13:53:00.004-04:00

"Blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." Jeremiah 17:8

I am now 30 weeks pregnant, and it seems that Ashlyn is quite an active baby! Ashlyn's growth and fluid levels have been looking good. Actually the amniotic fluid level has gone up quite considerably. Today's ultrasound at CHOP also confirmed this. I am still going to the Perinatal Center every Monday and Thursday for those non-stress tests (except for today since I went to CHOP), and the next CHOP appointment is scheduled for August 7 for the monthly echocardiogram. At 36 weeks of pregnancy my care will be transferred from my local OB/GYN to CHOP, and at that time (around Sept. 4) I will be going to Philadelphia weekly until it is time for delivery. Once Ashlyn is born the cardiac surgeons and doctors will be managing her case along with a geneticist.

Thank God for Ashlyn's good progress so far and that the fluid level is not concerning as it was before. Pray that I will start sleeping better at night. At this point in any pregnancy it can be hot and uncomfortable at night. Eric hasn't been sleeping very well either, and pray for strength for him as his workload has been a little extra lately.

What Peace Looks Like

2008-07-15T14:22:00.003-04:00

"My soul finds rest in God alone..." Psalm 62:1