Memories

I recently added another cdh family member and she “liked” quite a few of the pictures of Fiona in the hospital. While it was great to look back at my daughter as she was so small and “new,” it also brought back many memories of the hospital, monitors, nurses, surgeries, cafeteria food, etc. I spent so much time wondering and praying that Fiona would live to experience so many things that life has to offer. Part of me dreamed of all the things we’d do together while the other part wondered how I would go on if I didn’t get to take her home. Everyday was a constant worry and I made myself sick many times.

However, now I look to my left and see a 5 month old girl lying on the floor, sucking on her fingers while talking up a storm and stopping often to laugh at her brother. She’s rolling onto her side, almost onto her stomach, and blows raspberries and bubbles. She poops out her diaper, up to her belly button, and loves to splash in the bath. She sneaks peeks at the tv and reminds us when we walked out of the room that we didn’t take her with us. She is my life, my love, my baby girl.

We are about to start a new chapter. The time has come when her ng tube comes out weekly, due to sneaky little fingers that come out of her sock when she pulls it off, and it was never meant to be in this long. While Fiona refuses to take anything from a bottle, she loves purées and to lick apples and oranges. But since breast milk will be her main source of nutrition until she’s a minimum of 1 year,  she needs a g-tube. It is still hard for me think about but doing it now is what’s best for her. So, we will be heading back to Seattle in a few weeks to see her favorite surgeon, Dr. Gow.

On the upside, Fiona is almost 17 lbs., and 25.5 inches. She is almost on straight breast milk (right now we mix with a little bit of formula) and we are starting to go longer periods at night with no food.

Tomorrow Fiona turns 5 months old and that also means that I have been pumping for 5 months. We never had success with nursing, and everyday it is a challenge to pump every four hours, but I know that breast milk is what is best for my little girl. It gives her the nutrients and antibodies that she needs to be healthy and strong and I refuse to stop before a year.

Thank you so much to all our readers for the support you’ve shown us. Your thoughts, prayers, well wishes, good vibes, and all that jazz is what means so much to us. It is in part to you that my baby girl is here today. Thank you!

Decisions

Fiona and I met with a pediatric surgeon from our local Children’s Hospital today. He was very nice and informative but left the decision to do the g-tube surgery up to us and Ted and I have decided to wait. We know she’ll eventually need one but have decided to wait. She’s only 4 months old and this will be surgery #3. I can not thank my readers enough for all the support and love you’ve shown our family. Thank you from the bottom of my heart.

4 Months!

Four months ago today the world became a better place when my baby girl was born! She was given a 50/50 chance of survival but she squished those odds! She has survived two surgeries, her first 6 weeks in the hospital, twice daily injections, numerous x-rays, ultrasounds and blood pressure cuffs, a move across the state, a big brother and everything else life has handed her.
Fiona weighs over 15 lbs, is a bit over two feet long, has a feeding tube (which is replaced about every other week due to little curious fingers), a patch inside her body and an appendix on the wrong side.
However, all medical factors aside, my baby girl is just as wonderful as can be. She loves to watch her busy big brother, she talks and talks and talks, just found out she can suck her thumb, laughs, rolls to her side, has the cutest, chunkiest thighs, gives a big smile to the baby in the mirror, loves to be held and puts a smile on anyone’s face who meets her.
I am beyond proud of her and am so thankful for my family everyday. Growing up in a broken home has made me appreciate my husband and kids even more. We call ourselves Team Timoney and we will win as a family every time. Both of my child mean the world to me and I will always do whatever I need to in order to keep them safe, happy, healthy and secure. The best title I have ever had is to be called “mom.” Fiona has completed our family, and there is no telling of all the wonderful things to come our way.

Watching big bro be c-r-a-z-y!

Eating her mermaid

Getting ready for some apples

Sleeping on the floor after a wild day

Swallow Study

Yesterday Fiona and I traveled to Sacred Heart for the final of three studies. This one was the swallow study which shows through x-ray what happens when Fiona takes a liquid orally. Sound simple, right? Not so much. Through the few images that the feeding therapist was able to get, these are her findings:

*Tongue retraction in response to any nipple presentation besides the paci.
        -when a bottle nipple is present Fiona blocks the liquid going down by bunching her tongue up in the back of her throat.
*Avoidance of feeding once somewhat engaged.
         -If she does take down a few swallows, she stops quickly
*Safe pharyngeal swallows for limited swallows taken today.
         -What she does swallow does not aspirate. (Does not enter her lungs)
*No direct relation to bottle type with increase skill and interest in feeding.
         -No matter what bottle/nipple we try, the results will be the same.

These are the recommendations:

*Recommended continued non-oral nutrition. Will likely need g-tube.
          -she sees a g-tube needed within a few months. It is very unlikely that Fiona will receive her nutrition orally, at least until she is in solids.
*Continue oral trials 10-15mls of puree solids or thin fortified breast milk to maintain oral skill but decrease pressure and negative relation to feeds.
          -Holding Fiona in our arms to feed her is the same position that we use to put her to sleep. So, when we do offer the bottle we place her on her day wedge, smile, feed and treat it lightly. While she may take some time to receive full nutrition orally, we don’t want her to lose the skills necessary.

The next steps are conferencing with her medical staff to see where we go from here. Just like a friend put it, “cdh babies are like snowflakes, everyone is unique.”

Please continue to keep her in your thoughts and prayers.

Spoon feeding

Just when I think I have Fiona figured out, she surprises me again! She has always been on a steep incline with her weight gain but at just one week shy of 4 months, Fiona has tipped the scales at 15lbs. 9oz.! So, with that, Fiona has always been on 26cal/oz but she was switched today to 24 cal/oz. This will not make her lose weight but will slow it down. I’ve been reassured that her chunky thighs, that I love so much, will not disappear.
Not only did we change her calorie input, we also altered her food delivery. Fiona will take a bottle most of the time it’s offered but  rarely will she take anything more than 10-15ml at a time. So, our feeding therapist tried something new today. Fiona tried food from a spoon! Now, before I hear about how babies shouldn’t be given solids until a minimum of 6 months, let me explain: Most babies with cdh have some sort of aversion to oral. Since she is not showing much interest in the bottle, if we can show her that good things can happen in the mouth, maybe we can save her from total oral aversion. She was given such a small amount and will continue to receive all her nutrition from breast milk. However, to kind of reinforce this point, when Fiona was offered apples with breast milk (a liquid consistency) she loved the taste but continued to gag from the feeling of the spoons. So, we will continue to try with our pinky finger, her Binky, and hopefully eventually a spoon!
Go Fiona Go!
P.s. – the last test of three (upper GI, lower Gi , swallow study) is this Thursday. Wish her luck!

Getting ready for some apples!

Test Two

This one was awful! I thought the first one was hard to sit through, but this one proved me wrong. I was told this one would be short, about 20 minutes. Fiona and I arrived two minutes before our 7:45a check-in but we weren’t called back until 8:26a! We wandered down many hallways until we came to a room with a 12 inch wooden board in the middle of a large machine. I took Fiona out of her stroller (still trying to figure out baby wearing) and she smiled and smiled at the tech. But, that soon changed…
Fiona had to be strapped to the board with her arms up by her ears while 8 pieces of Velcro wrapped around her little body. The cameras then came a mere inches over her head and I was only allowed to touch her little fingers and stroke her hair. She was then given the substance through her ng-tube as they rotated her from one side to the other. While it was interesting to see her insides on the screen, it broke my heart to hear her scream, and scream, and scream. Luckily this one only took the twenty minutes they said it would, but it took her another five minutes to calm down. After a lot of hugs, cuddles and kisses, we were on our way home.
Since then, Fiona has been taken off BeneProtein and she takes just a mixture of breast milk and formula. She has been having regular bowel movements and is a lot less fussy throughout the day. She was also throwing up almost her whole feeds the moment they were done at both 1am and 5 am. But, me being the super mom that I am, suggested to the dietician that we not only lower the rate of those feeds, but lower the volumes as well. She was taking her whole amount every 4 hours, even though she was sleeping with a lower metabolism. So, we increased her day feeds slightly and lowered her night feeds slightly and she has only spit-up slightly! Yippee!
Everyday she is growing and showing us just how incredibly blessed we are to have her in our lives

Test One…

Fiona had her first test of three yesterday for her GI tract. For this one they added a dye to 2oz of her brest milk/formula mixture then I added it through her ng tube. She then had to lay on a table with a heavy vest wrapped around her and a heated blanket on top of that. I had two seperate thoughts in my head: 1st – she’s going to love this! Tight swaddle, warm blanket… 2nd- she’s going to hate this! Tight vest, too hot of a blanket… Reality: SCREAMING for the first ten minutes. Sleep for the next fifty.
While she was dozing, (with one of my hands placed on her head and the other one lightly holding her arm down and a Binky in her mouth…) I was able to watch the dye work it’s way through her stomach and both up her esophagus and also into her intestines. It was pretty cool to see.
When the test was over the technician said that Fiona definitely had reflux (knew that) but we’d have to wait for the other two tests and to talk to our doctor to get the results. Oh well…

Seattle Children’s Appointments

We are heading back on the road to go home after a long, but good, trip to the Westside. Both kids are fed and sound asleep in the backseat while my husband is driving us safely East and I am writing this blog to my readers. Not only am I writing this for you, my reader to experience cdh, but also for Fiona so that she may grow up and know of this amazing journey that she has been on.
We arrived in Everett to stay with my parents on Tuesday evening. After driving for six hours and making a few stops to stretch legs, we made it. It was great to see the family and catch up. Then on Wednesday morning, Ted, Fiona and I were back on the road to see her doctors while Kingston stayed with his Noni and loved on her and got to help out with her foster babies. (Yes, babies… She is one tough woman.)
Fiona’s first appointment was an ultrasound of her abdomen to view her clot. Sadly, once again, the ultrasound tech can’t tell us anything. I think they take an oath of silence.  Fiona does alright, for the most part, and the hour goes by fast. (Oh, let me point out, at this point in our trip she has only thrown up in the car on the way to my parents, and a little bit while waiting for the ultrasound to start. Success!) When done with the ultrasound, we are off to the Surgery clinic to see our favorite surgeon, Dr. Kenneth Gow. It is always such a delight to see him as he really cares about us and Fiona. Not only in a surgeon/patient way, but in a friend, good person kind of way. (He knows us so well that he too makes fun of me for having a true, blinding fear of windmills. He mentions it every time we see him!) Here is where he discusses with us the thought of a g-tube placement. He is very skeptical to do one for a few reasons. One being that babies with cdh have reflux. Whether she has a g-tube, ng-tube, whatever, she may always have reflux. But, he can not guarantee that getting a g-tube will make the reflux better, it may even make it worse. Another reason is that it is another surgery. She is only three months old and she’s already had two. He just feels that we may do more harm than good so he wants to wait in test results. Fiona is scheduled for an upper and lower GI study this week and he told us that after those studies, Drs. Ong (Pulmonary), Ledbetter (Pulmonary), Gow, Simmerman (pediatrician) and her dietician will discuss the results and see where we go from here. Dr. Gow told us that if she is still on the ng-tube by one year of age, then we’ll really need a g-tube. But until then, we’ll see what the studies say.
Our next appointment was with pulmonary. At this appointment we had three pulmonary doctors, a nutritionist and a nurse. (A lot of people for an examination room!) After looking at her x-ray, they said that while they are still growing, her left lung is pretty much the same size as her right and they look fabulous! Her x-ray showed two clear, beautiful lungs! We were shown how to count her breaths and she fell right into the range of “normal!” So proud of her! Our next time to come back to Seattle will be around the end of November for another chest xray and an echo of her heart, just to track progress.
Another thing that we discussed with them is the importance of a flu shot. I am warning all of my readers now. Starting in October, if you want to see my daughter, you MUST have had a flu shot this year. It is so important, it could mean the difference between life and death for her.
The last item on the agenda for this visit was her feedings and throwing up instances. They believe that her rate was too high and increasing too fast so we are starting low and increasing slowly. Hopefully this will reduce the instances of throw up in her future. We also need to start seeing our feeding therapist more often. The doctors did NOT sound pleased that since we have been home for almost two months we have only seen her three times. Oops… I knew she was taking a lot of vacations…
We then headed back to my parents house where it was babies, babies, babies! Three to be exact! Plus a toddler! Phew, busy night. But, it was wonderful to see my family and catch up.
Thursday morning came too fast and we were off to Children’s again, this time with a car full of stuff plus a toddler. First appointment of the day was a blood draw (which she HATES!). She had to have one on Wednesday to check her lmwh levels (low molecular weight levels – the blood thinner that I have been injecting twice daily into her thighs since we’ve been home), another on Wednesday in her heel to check her blood gas level for pulmonary, and one on Thursday to check other levels for hematology. She was then checked for weight and height (14.3lbs and 24 inches!) And we went into another room to wait for Dr. Pendergrass. He is quite a jolly old man who must play a liver-spotted Santa Claus every year. He told us that her proteins and other things in her blood looked fantastic and while she still had her blood clot, her body has made other routes around it. Which means:  NO MORE INJECTIONS!! No more weekly blood draws too! She is young enough that her body found ways around it and she shouldn’t have any problems with it again! We may have some explaining to do when she is 30 and pregnant on why her insides look a little different in that area (I think we’ll have more to explain than just that, though) but she is going to be just fine. Yayayayayayayayayayayayayayayayayayayayayayayayayayayayaaaaaaaaa!!!!!!! Such a relief to hear those words!
I heard many times before she was born that this is a tough, never ending journey. I heard there was going to be a lot of up hill and a lot of downhill. But, I also heard that she had a 50% survival rate. Well, she kicked that one out the window so I know she is going to keep impressing us every step of the way. And I know that I will forever be right by her side encouraging and helping her every step of the way.

Chillin’ at home

Hanging with big brother

Reflux Appointment

Well, her reflux doctor appointment turned out to be bigger than anticipated.
We were scheduled at the doctor at 2 in the afternoon but we had her feeding therapist and dietician coming earlier in the morning. Both women were to come at 9 am, the same time as her morning feeding. After the initial pleasantries, and with both women watching, I proceeded to give Fiona her bottle. After taking 5 ml, Fiona decided that she was done. She spit the bottle out, refused to take any more and became very upset.
Since we have been home from the hospital, Fiona’s intake of nutrition through her ng tube has increased. As of writing this, she is taking 105ml at 152ml/hr, 6x a day. While this seems like a good amount, she’s only ever taken 30ml by mouth. After that amount, she typically will spit the bottle out and refuse any more. Also, her occurrences of spitting up have gained in both volume and frequency. And once again, the culprit “reflux” rears it’s ugly head.
The ng tube that she is currently on is only meant to be temporary but she has had hers in for close to two months and she is showing us that she may not be ready to be off of it. One main contributor to her reflux is her tube. While it is common for CDH children to have reflux, having a tube in the way of the esphogus fully closing can also be a huge burden. So, there is the talk of a g-tube.
To sum it up, a g-tube is: “a tube inserted through the abdomen that delivers nutrition directly to the stomach.” You can check out more info here: http://kidshealth.org/parent/system/surgery/g_tube.html
Her doctor agrees with the therapist and dietician that more testing is necessary. So, starting the week after we go back to Seattle, Fiona starts a series of three different tests. One is to see what her upper GI tract does with food in her belly, another is to see what her lower GI tract does with food in her belly, and the last one is to see what happens when she takes something by mouth and swallows. All three of these are done separately, under xray. Hopefully these will be able to tell us more of what is going on.
So, on top of all that, next week our family packs up the car and heads back over the mountains to see the kids other grandparents and back to Seattle Children’s. While it’ll be great to see family, we’ll have two days of appointments in Seattle. On Wednesday Fiona will get an ultrasound of her abdomen, a visit with the best surgeon, Dr. Gow ( who is making a special trip in just to see her), and a clinic appointment to pulmonary. Then, on Thursday (the day we are driving back home), she has two more appointments with hematology to discuss her (hopefully disappearing) blood clot.
Needless to say, we are going to be very busy coming up this next month and my little girl needs all the prayers, love and support she can get.
Despite all these appointments, Fiona is doing fantastic. She smiles so much, and so big. She’s currently found her hands and spends most of her awake time trying to eat them. She loves to be held upright and in a sitting position (most likely because of the reflux) and watches her brother whenever she can. She continues to grow (13#12oz) and amaze us every single day.

Snug as a bug in a rug

Reflux

One main commonality that people with CDH have is reflux. Because their organs aren’t in their original position, they may not have formed as everyone else’s would.
A few weeks ago our feeding therapist noticed that Fiona showed signs of reflux when she was taking her bottle. Fiona has been on Omprazole since she was just a few weeks old but our therapist recommended that we have the doseage increased since she is growing. Our pediatrician increased the dosing but recently I was asking some other CDH mommies if their child coughed (Fiona does a few times daily) and they said that it could be another sign of refluxing. So, I’ll be making another appointment with her pediatrition to discuss her reflux.
The only time I every had reflux was when I was pregnant with both my babies and it was awful. I hope that she hasn’t suffered too long with it going undetected. However, if this has been the source of her grouchy attitude lately, hopefully we can fix it. This is just another sign that CDH is a life long battle and we’re just beginning.

This is a face on her that we’ve seen a lot lately. Hopefully a new reflux med will bring on more precious smiles.