Today is July 29th.
All I’ve been able to think about the last few days is what I was doing 1 year ago.
One year ago on July 26th, my day started fine, I was a bit nervous about going in for an amnio. We had been through so much already with infertility for so many years. I was finally feeling better after the miscarriage of my triplet. I had been so sick the beginning of my pregnancy, and now I felt fabulous.
Brian and I were still undecided if we wanted to know the sex of our twins. At the pre amnio ultrasound, they asked us if we wanted to find out, we looked at each other and said ok, why not….We joyously found out we were having 2 little girls. Two perfect little girls. The ultrasound showed that everything looked perfect, at least no visible signs of birth defects. I think we both “knew” that we would have at least one daughter, and figured it might be likely that both would be girls. Brian said because he was such a “naughty” boy that he would be “blessed” with having daughters – so we always knew. We were ecstatic!! Two daughters. My heart was just swimming!!!!
Looking back, trying to remember those feelings, the joy I felt in my heart knowing I was having two healthy girls. All the anticipation of twins. I feel such incredible sorrow now, for those lost joyous memories. I want them back. I want both my girls. I want my healthy full term twin daughters back. I want the choice again to not do an amnio. My life changed forever that day. Why couldn’t I have left well enough alone. Let nature take its course?
Obviously, with my “advanced maternal” age at the time of 38 (almost 39), we were worried about possible Downs Syndrom and other birth defects; it was “standard practice” to do an amnio when you are over 35. After the ultra sound tech left and we were there getting ready for the doc to come in to do the amnio, Brian asked me, everything looks good, do you think we really need to do the amnio? I think I said something like, “Well, it’s my age, they really recommend it”….Famous last words, right? I’ve regretted that “moment” so many times over this last year. If I could take it back. How was I to know?
Well, before the amnio started, the doc said he was going to insert one needle into my abdomen, and go into both sacs. I said to him, “Well, why would you want to put two holes in one of the sacs, doesn’t that seem more risky?” He answered “Well, that’s just eh way I do amnios.” Again famous last words.
(If you couldn’t tell, I DEFINITELY have a problem with the way he did the amnio, as any other doctor I've ever spoken to always sounds "surpirsed" when they hear he did it with one needle stick versus two. Also, by the fact that he didn't use dye to differintiate the two sacs).
He inserted the needle to extract amniotic fluid through Corinne’s sac, through the membrane that separated the two of them and then into Kaitlyn’s sac. He seemed to have to really “push” to break through into Kaitlyn's sac. I was so scared, I could hardly breathe. On the ultrasound we could see our girls not liking this intrusion into their worlds. He withdrew fluid from Kaitlyn’s sac. Then pulled back the needle again into Corinne’s sac and withdrew fluid from her sac. I was so nervous.
Fast forward to getting home. I spent the entire day in bed, (as recommended). I have a picture of myself lying on the bed with our female dog. Brian took a picture of the 4 McCarthy Girls. We were going to give this picture to our family to surprise them with the news that we were having 2 girls! We were so excited. It FINALLY felt like this pregnancy was going to materialize – that we were going to be parents. We were having daughters!!! Here's a link to that picture (I'm having problems uploading pictures to blogger): The 4 McCarthy Girls At the bottom of this picture you can see the date and time it was taken 1:20 on 7/26/2005.
At about 10pm on the 26th, I felt a trickle. The Doc had said there might be some minor leaking from the procedure. It didn’t think much of it. Later that night I felt more, but again didn’t think much of it.
On the morning of the 27th, my water broke. I started leaking a lot more amniotic fluid. I hear of women wondering whether it was “urine” or amniotic fluid – I NEVER had a doubt in my mind. This was definitely amniotic fluid leaking out of me. We called the doc’s office. They said get in bed – (I was given the choice of coming in), but what would that have shown? That I was leaking amniotic fluid (I knew I was), and all they could have done was to tell me to stay down in bed. The doc who did the amnio NEVER called. Never got on the phone with me….
What is happening? Oh My God. This can’t be happening. I felt in shock. I still believed that it was going to seal. In 2 days time we are supposed to be moving to our new house that we just purchased.
Fast forward to a year ago today, 7/29. We move. Well, I don’t really move. Brian packs everything except for the bed I’m lying on. He takes our guest bed to our new house. My mom flew up to help. I got out of bed, laid in the back seat of her car, drove to the new house, went straight to the guest bed and got back into bed. No looking at my new house. Nothing. Straight into the bed. For 10 weeks!! 3 months!! I finally owned my first house and never even saw it for 10 weeks.
This was hell. Horrible, horrible hell. I can’t believe this is happening…..
This morning I sat out on our deck in our back-yard thinking about all this. Remembering one year ago. I haven't spoken about it for a while now, as it’s very, very painful for me to remember. I felt the need this morning to remember and to let all of you know who may not have been with me from the beginning.
Kaitlyn just vomited terribly this morning. Yes, I’ve indicated the vomit is “better”, but when I say better, she’s not vomiting 20x a day any more, now it’s just maybe 8-15 times. She’s still vomiting. I miss my daughter Corinne more than I can say. It’s so hard for me to put up a wall when I see twins. I get so sad. That should be me. That should be our family. Brian often tells me when he thinks of Corinne too and how much he misses her. My mother Corinne (who our daughter is named after), too remembers her and wonders what she would be like. I like it when people remember her. It means a lot to me, as I gave birth to my two daughters. Corinne lived and died in my arms.
Here is a link to a slideshow of their birth on 10/4/05:
Kaitlyn and Corinne's Birth Slideshow
Thank you everyone for your comments and helping us remember Corinne. She’ll never be forgotten. Corinne’s ashes are in Kaitlyn’s room, along with a snip of her hair, both of their ID bracelets from the hospital, the blanket that Corinne was wrapped in when she died, a picture of the two of them together, with Kaitlyn holding Corinne’s hand, hand-knit booties from Jodi, a PROM mom friend that were made to match their feet sizes when they were born, I have angels sitting on the box that hold all of these items. And this box is next to the box of ash's of our poor pup, Kailan, who became very sick throughout this whole ordeal and we had to put to sleep in February.
My angel daughter Corinne is looking down on her sister. Corinne who stayed in my belly for 10 long weeks of leaking her precious fluid out of me day after day. She stayed long enough for Kaitlyn to be here with us today. Thank you my beautiful daughter Corinne for being strong enough to watch over your sister and keep her safe forever. As I write this tears roll down my checks. Why is this still so hard and painful?
1 year ago, this all started. July 26th is a day that will forever be etched into my memory. I want to take that day back. I want to feel my babies in my belly again. I want to have a normal pregnancy, I want to have a normal deliery, I want to have normal breast feeding, I want to hear my babies cry when they are born (I'm still waiting to hear Kaitlyn's cry), I want to hold them in my arms and not have one die in my arms in a few hours and wait another month to hold the other, to bring them home a few days after they were born instead of 4 long months.
Why did I have that amnio? Why, why, why why, why, why, why, why, why, why, why????????????
If you would like to "relive" my story from a year ago, read the first post of my blog: The first post
Saturday, July 29, 2006
Friday, July 28, 2006
More July Pictures...
My beautiful little girl... her hair sticks up and is all fuzzy when it's clean. It's defintely Strawberry blonde.
Kaitlyn has just found her feet.
Some close-ups on mom's lap - she's sucking on her lower lip
Kaitlyn likes to try to put anything in her mouth (except food that is).
Visit with Holland and Eden
Here is Billie holding Miss Kaitlyn. Billie is my online Preemie mom friend from Michigan. We met "on-line" and arranged to meet when she was visiting here in Northern California the first part of July. Not long after this shot was taken, Kaitlyn proceeded to vomit over my shoulder all over the carpet of the restaurant... Here's the link to Billies blog: http://micropreemietwins.blogspot.com/
This is a picture of John (Billie's husband) and Eden. Holland and Eden were born at 24 weeks, and sadly Eden has Cerebral Palsy. They are such beautiful happy girls, it was so wonderful to meet them in person - I felt like I knew them already.
Here is Billie and Holland. Holland unfortunately became sick while she was here and had to go to the ER. She still wasn't feeling great when we met her for dinner.
A group shot of the preemie parents and our precious bundles.
More Pictures...
I am having problems uploading pictures, so they'll have to be in seperate posts....
Kaitlyn modeling a new outfit from Nana (my mom). she's actually already outgrown it!
Kaitlyn and dad hanging out on the couch
This is the view I had from the Parents Apartment when I stayed at the George Mark Center. You can see why I was able to relax. I sat on the couch in the aprtment and read a book! This has to be the first relaxing moment I've had in a year (I still don't really call my 3 months on bed rest as "relaxing". www.georgemark.org 
Here is Kaitlyn in her room at the Geroge Mark center...
Wednesday, July 26, 2006
Pictures finally!
Sometimes Blogger is really difficult to upload pictures, I've been trying for a few days now, but I can't seem to upload any more, maybe I'll try in another post...
A close-up - Kaitlyn and her dad sure do look alike!
This picture was from 4th of July weekend!
OK, this is the "wild-life" in our back-yard. We have 3 mamma turkeys and many, many little baby turkeys. Now they don't live in our backyard, but they've taking a liking to eating the plumbs on our trees. Can you see the dirt mounds they are standing on? These are the mole hills - we have a horrible mole problem in our back-yard that has become Brian's downfall.
It is supposed to be a big "No-No" to have Kaitlyn (and preemies) in exersausers or Door way jumpers (it's supposed to be bad for their needs, hips and growing joints), but as you can see her legs don't even reach the bottom! She's just started liking it a bit, and we are using it very rarely, but it's fun for Kaitlyn to be upright
Look at those tiny feet! so cute!
This was from our incredibly HOT day this week when Brian, Kaitlyn and I escaped to the mall and a restaurant for dinner and Margaritas. Look at our big girl, she's really growing!
Some long-awaited eye contract with my daughter.
With Dad, getting a little upset. Look at her little purple hair clip (this was a purchase on the Mall walk - it didn't really stay in her hair, but it sure was cute!)
No Kaitlyn's not walking yet (or standing or sitting on her own), but it sure looks like she's taking a quick little step across the table in this picture with dad.
A close-up - Kaitlyn and her dad sure do look alike!
This picture was from 4th of July weekend!
OK, this is the "wild-life" in our back-yard. We have 3 mamma turkeys and many, many little baby turkeys. Now they don't live in our backyard, but they've taking a liking to eating the plumbs on our trees. Can you see the dirt mounds they are standing on? These are the mole hills - we have a horrible mole problem in our back-yard that has become Brian's downfall.
Tuesday, July 25, 2006
It's Almost 7/26
First of all, many apologies for all of you who either regularly check my blog for an update on Miss Kaitlyn, for those who have posted comments or sent me emails on my plea for help earlier this month. I think I just basically became too overwhelmed by everything to do a blog update, then it became so delayed that the task of doing an update became even harder.
I’m sorry that I may not have been able to get back to many of you, I hope that you’ll excuse my lack of response – please just know that I do READ ABSOTLUTELY everything that you post and email to me, and I greatly appreciate your thoughts, concerns, suggestions and prayers for us. (I currently have 364 emails in my inbox alone that need responding too)!
It’s absolutely amazing to me that my blog now has received almost 33,000 visitors! Wow. I wish I could get that amount of traffic to visit my Marin Real Estate website: http://www.bayarearealestatesales.com/
Also, with the heat wave we are having being inside the house, sitting in front of my computer is an impossible task. I know those in other parts of the country hot weather is the "norm" for summer, BUT, I'm guessing you all of A/C. It rarely gets above 90 here in the summer, so no one has A/C. This week it's been over 100 every day. EVERY DAY! It was over 110 on Sat and Sunday. And we don't have A/C! It's horrible! I've been taking Katilyn for indoor "Mall walks" to try to stay cool.
I’ll post pictures to this entry soon – so check back….
Well, where to start….
Our crazy life full of doctor visits, vomit, working has continued as always…Here’s a brief list of doc visits from July: Liz and Brian dentist a number of times, Kaitlyn Pediatrician appt, K Lung appointment, K Early Intervention appointments at home (3x), Liz ENT appointment (for my continued jaw issues), K NICU follow-up appt, K GI appointment, K Physical Therapy appt, K ENT appt (for her vocal chord next week). I have a new real estate listing: http://www.27rutherford.com/ ; Brian played hockey in the Annual California Firefighters Olympics all last week in San Jose, Kaitlyn spent 2 nights at the http://www.georgemark.org/ center in preparation of a real vacation that Brian and I are taking in August; I was able to meet one of my online micro preemie friends the beginning of the month:
Holland and Eden Blog
Kaitlyn updates:
New GI second opinion: Well, unfortunately, we didn’t learn anything new. I have to say, though that K’s previous GI doc has been much, much better. We’ve been communicating regularly via email, which has been very helpful and consulting with her dietician. We’ve tried to make a number of changes (MANY based on all of your suggestions), AND we have seen some improvement in the amount of vomiting.
She now actually has some of her day feeds (usually the 6pm) with NO vomiting! Yes, NO vomiting. One day, she actually did the 10 am and 2pm with NO vomiting (she’s NEVER had the 10 am feed with no vomiting before), but then the day after that she had a huge vomit day. So we are still just taking things a day at a time. BUT, it’s not 20 times a day any more.
K has changed reflux meds, she’s now on Prevacid (instead of Prilosec). I’m thickening her feeds with rice cereal instead of oatmeal cereal. We have increased the calorie content of her feeds (and reduced the volume), we are using Good Start formula during the day and primarily breast milk at night.
She’s now on 100 ml of formula 3x a day. (we used to mix it 50% formula/50% breast milk) but are now on just formula during her day feeds (to save the BM for night feeds), which is around 28 calorie (extra formula and rice cereal). At night she’s on 1/3 formula (while I’m still awake) and 2/3 breast milk (about 650 ml total). When I put her to bed, I usually get a large vomit out of her (via burping), switch her to breast milk and then she’s vomit free the rest of the night.
The issue still comes down to the fact that I still will run out of breast milk. Can you believe the guilt I feel for stopping? Many of you remember the pictures of my FULL freezer - I thought I’d never run out but I also never thought she’d have issues with formula.
Freezer Picture
I am absolutely touched by the generosity of 3 women who have generously offered to donate their breast milk to Kaitlyn when they heard my breast milk plight: My sister in law Elissa in CT; another a local preemie mom, Lisa, who has had 2 preemies; and the 3rd a total stranger in TX, MacKenzie, (http://www.thebuhs.blogspot.com/) who heard of my story and blog from her friend who met me at the NICU while Kaitlyn was still there.
Now some of you out there in Internet land might think it’s strange that I’m actually accepting the offer of these amazing women – but as we speak, they are arranging to ship their frozen milk to me. I really am speechless as to this amazing generosity and willingness to help out our little Miss Kaitlyn. Thank you, thank you, thank you Elissa, Lisa and MacKenzie. You will always be a part of now of Kaitlyn!
And to you, my beautiful daughter Kaitlyn when you are old enough to read this – I just want you to know how many people out there love, pray and just want you to get better!
The new GI doc was pleased with her overall weight gain, and doesn’t think we need to go the route of doing a fundo surgery (yeah, as Brian and I are very against the surgery as it’s a life-long lasting surgery, which causes gagging, hacking and coughing - as she wouldn’t be able to through up but her little body would still try to). I think I’d be more for the surgery if she wasn’t “thriving”. But, all her docs (with the exception of one) are in agreement with us, that as long as she continues to gain weight on the scale (she’s going along nicely just under 5% at every check-up) we are to continue as is. The GI doc did certainly agree that it’s extremely tough on us. I asked about long term consequences of the vomiting on her esophagus and teeth (she still doesn’t have any yet), but because she’s on the acid reducer (Prevacid), she should be ok.
Eyes:
Kaitlyn has a follow up eye appointment next month, but SO far, her eye crossing situation has greatly improved. In fact, we think it may be gone all together and just took care of itself. This is great news.
Physical Therapy:
At K’s physical therapy appointment last week, the PT said she couldn’t believe how improved Kaitlyn seemed. Brian and I too feel that in the last 2 weeks she really seems to have turned a corner in terms of interacting with us.
Remember how I would always say that Kaitlyn averted her gaze from us. It was so difficult, knowing that your own daughter was too overwhelmed to want to look at her own parents. BUT the good news is that seems to be getting much better. She really does like to look and watch us closely now! Wow. I really needed this affirmation from her. It makes my heart sing when my daughter loves to look up at me. Now she’s still not smiling, but I’ll take the gazing! It’s amazing. I have actually gotten a few, very fleeting smiles from her, she’ll stick her tongue out and smile a bit with her eyes and the corner of her mouth turns into a smile. One day, I got about 4 of these in a row, and another day I got about 2. But that was well over a week ago, and I’m waiting for a repeat appearance of her fleeting tongue smile. Certainly not long enough to capture it on film.
She still isn’t rolling over or sitting up on her own, or pushing up with her arms while on her tummy, but the PT felt really, really good about her progress and “normal” babies pick their own time to do these things sometimes too, so I’m not too worried. She’s strong, and is really starting to get more coordinated in grabbing with both of her hands.
Lungs:
At her lung doc appointment, the doc indicated that she felt very good about Kaitlyn’s lungs at this point. They sound good and clear. She’s still never gotten sick, and we are looking into arranging another lung capacity test in a reduced oxygen environment. She still has BPD, but she is generally doing really well. Her breathing often sounds congested, but it’s always limited to upper respiratory, and not her lungs.
Right after the 4th of July, I was able to meet with Billie, her husband John, and their 2 beautiful micro preemie twins, Holland and Eden. http://micropreemietwins.blogspot.com/
There were here in Northern California visiting her Aunt, and we arranged to meet for dinner in San Francisco. Like Billie, I’m so behind on updating of our wonderful visit….but to you Billie and all of your family – we had such a nice time getting to know all of you and meeting the girls. I felt like I already knew all of you and it was just a wonderful, wonderful thing to meet you all in person. I feel a special bond with you, and I’m so glad you go the chance to meet and hold Miss Kaitlyn. As we’ve commented to each other before, neither of us knows which is harder: the death of a child or having children with disabilities. They are both so terribly sad and difficult, and my heart goes out to all of you and Holland and Eden. They are absolutely beautiful girls, so incredibly loved by their parents and I’m hoping that we’ll be able to keep in touch as the years go by. I will post some pictures of our visit together.
George Mark Center and a vacation!!!
I posted a few months ago about a wonderful, wonderful respite and hospice home for children. Well, Brian and I decided to actually plan a much-needed vacation for my upcoming 40th birthday and our 2nd wedding anniversary. We are going to take Kaitlyn to the George Mark Center for Respite care. In order to “try it out” I took Kaitlyn there for 2 nights earlier this month.
In order to go, the “prep” time was crazy for me. It required a doctor visit as well as written orders, and that’s right when K was vomiting like crazy so it was hard to give official “food intake orders” as they were changing minute by minute. Lots of faxing of authorization forms from all different agencies and doctors…. I had to pack so much stuff for her (just for 2 nights), syringes, wedges for sleeping, feeding bags, frozen breast milk, formula, rice cereal, measuring devices, bottles, etc. etc. I have to say as I was packing everything that this really wasn’t feeling much like respite, as the work to get her ready was overwhelming.
BUT, once I got there, it was so wonderful. I’ll post some pictures from the place so you can see how amazing it is. I actually spent the first night there in their Parent Apartment. I sat in the room in the evening, in front of a beautiful picture window that looked out to a rose garden and just read a book as the sun set. It was wonderful. Then I left her there for the 2nd night, which wasn’t as relaxing, as once I was home I had a million things that needed to be taken care of.
We actually do have a vacation planned at the end of August! Brian and I are going to go to the Dominican Republic for 9 days! We are going to an all inclusive resort and we can’t wait! It will be for my 40th birthday (uggh!!!!) and our 2nd wedding anniversary. What a year we’ve had! We’ll be taking Kaitlyn to the Center while we are gone.
Tomorrow is a day I’m dreading. Tomorrow is July 26th.
July 26th 2005 was the day of my fateful amnio. One year ago my life changed for ever. If I hadn’t had that amnio I would have 2 healthy twin daughters with me today. It’s hard to even think about how different things would be. I constantly wonder what would Corinne look like, what would her personality be like. What would Kaitlyn’s voice sound like? Would she smile and eat? How big would they be? So many questions that I’ll never know the answers to.
I’ll post pictures soon!
I’m sorry that I may not have been able to get back to many of you, I hope that you’ll excuse my lack of response – please just know that I do READ ABSOTLUTELY everything that you post and email to me, and I greatly appreciate your thoughts, concerns, suggestions and prayers for us. (I currently have 364 emails in my inbox alone that need responding too)!
It’s absolutely amazing to me that my blog now has received almost 33,000 visitors! Wow. I wish I could get that amount of traffic to visit my Marin Real Estate website: http://www.bayarearealestatesales.com/
Also, with the heat wave we are having being inside the house, sitting in front of my computer is an impossible task. I know those in other parts of the country hot weather is the "norm" for summer, BUT, I'm guessing you all of A/C. It rarely gets above 90 here in the summer, so no one has A/C. This week it's been over 100 every day. EVERY DAY! It was over 110 on Sat and Sunday. And we don't have A/C! It's horrible! I've been taking Katilyn for indoor "Mall walks" to try to stay cool.
I’ll post pictures to this entry soon – so check back….
Well, where to start….
Our crazy life full of doctor visits, vomit, working has continued as always…Here’s a brief list of doc visits from July: Liz and Brian dentist a number of times, Kaitlyn Pediatrician appt, K Lung appointment, K Early Intervention appointments at home (3x), Liz ENT appointment (for my continued jaw issues), K NICU follow-up appt, K GI appointment, K Physical Therapy appt, K ENT appt (for her vocal chord next week). I have a new real estate listing: http://www.27rutherford.com/ ; Brian played hockey in the Annual California Firefighters Olympics all last week in San Jose, Kaitlyn spent 2 nights at the http://www.georgemark.org/ center in preparation of a real vacation that Brian and I are taking in August; I was able to meet one of my online micro preemie friends the beginning of the month:
Holland and Eden Blog
Kaitlyn updates:
New GI second opinion: Well, unfortunately, we didn’t learn anything new. I have to say, though that K’s previous GI doc has been much, much better. We’ve been communicating regularly via email, which has been very helpful and consulting with her dietician. We’ve tried to make a number of changes (MANY based on all of your suggestions), AND we have seen some improvement in the amount of vomiting.
She now actually has some of her day feeds (usually the 6pm) with NO vomiting! Yes, NO vomiting. One day, she actually did the 10 am and 2pm with NO vomiting (she’s NEVER had the 10 am feed with no vomiting before), but then the day after that she had a huge vomit day. So we are still just taking things a day at a time. BUT, it’s not 20 times a day any more.
K has changed reflux meds, she’s now on Prevacid (instead of Prilosec). I’m thickening her feeds with rice cereal instead of oatmeal cereal. We have increased the calorie content of her feeds (and reduced the volume), we are using Good Start formula during the day and primarily breast milk at night.
She’s now on 100 ml of formula 3x a day. (we used to mix it 50% formula/50% breast milk) but are now on just formula during her day feeds (to save the BM for night feeds), which is around 28 calorie (extra formula and rice cereal). At night she’s on 1/3 formula (while I’m still awake) and 2/3 breast milk (about 650 ml total). When I put her to bed, I usually get a large vomit out of her (via burping), switch her to breast milk and then she’s vomit free the rest of the night.
The issue still comes down to the fact that I still will run out of breast milk. Can you believe the guilt I feel for stopping? Many of you remember the pictures of my FULL freezer - I thought I’d never run out but I also never thought she’d have issues with formula.
Freezer Picture
I am absolutely touched by the generosity of 3 women who have generously offered to donate their breast milk to Kaitlyn when they heard my breast milk plight: My sister in law Elissa in CT; another a local preemie mom, Lisa, who has had 2 preemies; and the 3rd a total stranger in TX, MacKenzie, (http://www.thebuhs.blogspot.com/) who heard of my story and blog from her friend who met me at the NICU while Kaitlyn was still there.
Now some of you out there in Internet land might think it’s strange that I’m actually accepting the offer of these amazing women – but as we speak, they are arranging to ship their frozen milk to me. I really am speechless as to this amazing generosity and willingness to help out our little Miss Kaitlyn. Thank you, thank you, thank you Elissa, Lisa and MacKenzie. You will always be a part of now of Kaitlyn!
And to you, my beautiful daughter Kaitlyn when you are old enough to read this – I just want you to know how many people out there love, pray and just want you to get better!
The new GI doc was pleased with her overall weight gain, and doesn’t think we need to go the route of doing a fundo surgery (yeah, as Brian and I are very against the surgery as it’s a life-long lasting surgery, which causes gagging, hacking and coughing - as she wouldn’t be able to through up but her little body would still try to). I think I’d be more for the surgery if she wasn’t “thriving”. But, all her docs (with the exception of one) are in agreement with us, that as long as she continues to gain weight on the scale (she’s going along nicely just under 5% at every check-up) we are to continue as is. The GI doc did certainly agree that it’s extremely tough on us. I asked about long term consequences of the vomiting on her esophagus and teeth (she still doesn’t have any yet), but because she’s on the acid reducer (Prevacid), she should be ok.
Eyes:
Kaitlyn has a follow up eye appointment next month, but SO far, her eye crossing situation has greatly improved. In fact, we think it may be gone all together and just took care of itself. This is great news.
Physical Therapy:
At K’s physical therapy appointment last week, the PT said she couldn’t believe how improved Kaitlyn seemed. Brian and I too feel that in the last 2 weeks she really seems to have turned a corner in terms of interacting with us.
Remember how I would always say that Kaitlyn averted her gaze from us. It was so difficult, knowing that your own daughter was too overwhelmed to want to look at her own parents. BUT the good news is that seems to be getting much better. She really does like to look and watch us closely now! Wow. I really needed this affirmation from her. It makes my heart sing when my daughter loves to look up at me. Now she’s still not smiling, but I’ll take the gazing! It’s amazing. I have actually gotten a few, very fleeting smiles from her, she’ll stick her tongue out and smile a bit with her eyes and the corner of her mouth turns into a smile. One day, I got about 4 of these in a row, and another day I got about 2. But that was well over a week ago, and I’m waiting for a repeat appearance of her fleeting tongue smile. Certainly not long enough to capture it on film.
She still isn’t rolling over or sitting up on her own, or pushing up with her arms while on her tummy, but the PT felt really, really good about her progress and “normal” babies pick their own time to do these things sometimes too, so I’m not too worried. She’s strong, and is really starting to get more coordinated in grabbing with both of her hands.
Lungs:
At her lung doc appointment, the doc indicated that she felt very good about Kaitlyn’s lungs at this point. They sound good and clear. She’s still never gotten sick, and we are looking into arranging another lung capacity test in a reduced oxygen environment. She still has BPD, but she is generally doing really well. Her breathing often sounds congested, but it’s always limited to upper respiratory, and not her lungs.
Right after the 4th of July, I was able to meet with Billie, her husband John, and their 2 beautiful micro preemie twins, Holland and Eden. http://micropreemietwins.blogspot.com/
There were here in Northern California visiting her Aunt, and we arranged to meet for dinner in San Francisco. Like Billie, I’m so behind on updating of our wonderful visit….but to you Billie and all of your family – we had such a nice time getting to know all of you and meeting the girls. I felt like I already knew all of you and it was just a wonderful, wonderful thing to meet you all in person. I feel a special bond with you, and I’m so glad you go the chance to meet and hold Miss Kaitlyn. As we’ve commented to each other before, neither of us knows which is harder: the death of a child or having children with disabilities. They are both so terribly sad and difficult, and my heart goes out to all of you and Holland and Eden. They are absolutely beautiful girls, so incredibly loved by their parents and I’m hoping that we’ll be able to keep in touch as the years go by. I will post some pictures of our visit together.
George Mark Center and a vacation!!!
I posted a few months ago about a wonderful, wonderful respite and hospice home for children. Well, Brian and I decided to actually plan a much-needed vacation for my upcoming 40th birthday and our 2nd wedding anniversary. We are going to take Kaitlyn to the George Mark Center for Respite care. In order to “try it out” I took Kaitlyn there for 2 nights earlier this month.
In order to go, the “prep” time was crazy for me. It required a doctor visit as well as written orders, and that’s right when K was vomiting like crazy so it was hard to give official “food intake orders” as they were changing minute by minute. Lots of faxing of authorization forms from all different agencies and doctors…. I had to pack so much stuff for her (just for 2 nights), syringes, wedges for sleeping, feeding bags, frozen breast milk, formula, rice cereal, measuring devices, bottles, etc. etc. I have to say as I was packing everything that this really wasn’t feeling much like respite, as the work to get her ready was overwhelming.
BUT, once I got there, it was so wonderful. I’ll post some pictures from the place so you can see how amazing it is. I actually spent the first night there in their Parent Apartment. I sat in the room in the evening, in front of a beautiful picture window that looked out to a rose garden and just read a book as the sun set. It was wonderful. Then I left her there for the 2nd night, which wasn’t as relaxing, as once I was home I had a million things that needed to be taken care of.
We actually do have a vacation planned at the end of August! Brian and I are going to go to the Dominican Republic for 9 days! We are going to an all inclusive resort and we can’t wait! It will be for my 40th birthday (uggh!!!!) and our 2nd wedding anniversary. What a year we’ve had! We’ll be taking Kaitlyn to the Center while we are gone.
Tomorrow is a day I’m dreading. Tomorrow is July 26th.
July 26th 2005 was the day of my fateful amnio. One year ago my life changed for ever. If I hadn’t had that amnio I would have 2 healthy twin daughters with me today. It’s hard to even think about how different things would be. I constantly wonder what would Corinne look like, what would her personality be like. What would Kaitlyn’s voice sound like? Would she smile and eat? How big would they be? So many questions that I’ll never know the answers to.
I’ll post pictures soon!
Sunday, July 23, 2006
so late in updating....
I PROMISE to write more soon, but we've had SOME improvement with k's vomiting!!!!
Thursday, July 06, 2006
4th of July - 9 months and counting
On July 4th, Kaitlyn turned 6 months adjusted and 9 months actual on July 4th.
Kaitlyn and I participated with our local multiples group in the 4th of July Parade (Brian was at work). It was wonderful and difficult at the same time. The parents of the multiples group have been so wonderfully supportive of me and my story, but at the same time, it was very difficult to see all the twin stroller and knowing that I should have both my girls with me. I also felt sub-conscious of the "public" thinking that they were wondering why I was walking with all the multiple stroller.
I can't thank the Multiples group enough for their continued support - I've met so many new wonderful friends. Did you know that in our county (Marin) we have more mutiple births than ANWHERE else in the country? Amazing.
Here are a few pictures from the parade.
Kaitlyn was on her feeding pump during the walk, and of course vomited about 3 times. But at least I got out of the house right?
I hope you all had a Happy 4th of July!
Kaitlyn and I participated with our local multiples group in the 4th of July Parade (Brian was at work). It was wonderful and difficult at the same time. The parents of the multiples group have been so wonderfully supportive of me and my story, but at the same time, it was very difficult to see all the twin stroller and knowing that I should have both my girls with me. I also felt sub-conscious of the "public" thinking that they were wondering why I was walking with all the multiple stroller.
I can't thank the Multiples group enough for their continued support - I've met so many new wonderful friends. Did you know that in our county (Marin) we have more mutiple births than ANWHERE else in the country? Amazing.
Here are a few pictures from the parade.
Kaitlyn was on her feeding pump during the walk, and of course vomited about 3 times. But at least I got out of the house right?
I hope you all had a Happy 4th of July!
See all the burp cloths at the ready and her "Daddy is my hero" fireman bib?
You can see the feeding tube go up the left side of the stroller and her feeding pump is in the small black bag on top of the stroller. The marchers ("Redwood City" in front of us are actually quite funny. Redwood City is 40 minutes from where we live, but supposedly, the batoon twirlers were kicked out of their town parade because they marched too slowly, so they joined ours!
Some of our twin moms and kids that were in the pardade with me. (See the triplets in the very back?)
Our fearless leaders, Jen and Heather, of our group holding the banner.
Tuesday, July 04, 2006
Disjointed thoughts/questions about poor Kaitlyn's vomiting
Well, I belong to a few message boards where I go to find out help for Kaitlyn and all of her issues.
Her vomiting is bad. Really bad. I almost posted today a signle sentence: Help, I'm having a nervous break-down. Well, I'm thinking a bit more straight now, but I am going to post my plea for help that I've posted to a few boards - it's a few posts, hence why it's a little disjointed, but here you go:
Tonight I about had a nervous break-down. Seriously. Kaitlyn vomited about 20x yesteray and today. Yes 20 times! this is not spit-up. Vomit! Lots of vomit. over and over and over.
OK, I've about had it with my DD's vomiting, I know she's had it too. I'm absolutely convinced that she's miserable, and would be a completely different baby if I could just get her vomiting to stop. She still doesn't smile - it just breaks my heart. She's an "amazingly good baby" for all the vomiting she has to endure, she sleeps great, is content and generally good natured - she just doesn’t' eat and vomits a lot and doesn't smile or laugh like a 6 mo old baby definitely should.
My Surviving twin daughter was born 13 weeks early, she's now almost 6 months adjusted. She's now about 12.5 pounds. She's in the 5% for her adjusted age.
I'm fed up with her GI doc, I have an appointment with another one, but have to wait 3 weeks. I'm about out of breast milk - Well, I think she's got about a month or more left (frozen).
I thought I'd turn to all of you for help/advice/suggestions: Here's some "medical" background…. -paralyzed left vocal chord (it's "open") . She has a small amount of aspiration shown by her recent swallow study, but I think it was only when she first put food in her mouth, as she's not used to it - once she realized, she actually swallows quite well (as seen by the swallow study). Her first swallow study while she was still in the nicu showed no aspiration.
-g-tube fed (as she's lost all desire to suck, doesn't understand what being hungry is all about). She was always NG fed while in the nicu and when she came home. She USED to breast feed and suck a bottle decently well, she just never ate enough (according to the NICU so always had to be supplemented).
-She was taking a small amount (of cereal and some solids) by spoon, but that has since gotten bad, she now shuts her lips and wants none of it
-She vomits all the time. Sometimes worse than others. When she vomits "bad" it seems to go in cycles. Lasts for a few days.. Just when we think the vomit is a bit better, and even go a feed or 2 without vomit, then she vomits horribly
-She is fed: 3 one hour pump feeds of breast milk vol: 140 over an hour; then for 10 hours at night continuously (700 vol).
-We've started trying formulas, as my pediatrician found out that the GI doc didn't have her getting enough vol and the formula is more caloric than breast milk - she used to be on fortified breast milk, but I think it caused her to vomit more (it was phlegm thick formula vomits that she doesn't have without formula)-----We tried neosure again (that was what she was on as a fortifier and our pediatrician said preemies should be on that for a year (our pediatrician was a neonatologist - she's great); also tried some sort of milk protein digested formula called Allementum) ---when we tried these formulas, we tried them at the "night" feed time. She NEVER vomits during her night feeds on breast milk, it's at a slower rate. Well, on both occasions of the formula, she vomited horribly…..So, even though she vomits on and off with breast milk, she never normally vomits at the night feeds, and it was so bad on the formula - I stopped the feed, defrosted breast milk, changed it over, and then no problem….
-She was on reglan, it didn't seem to do anything-She's never constipated and never had NEC-She was on zantac - didn't seem to do anything, she's now on prilosec Any suggestions for us? Here's a few specific questions - -A question or thought I've always had, could she be having problems with something (diary) that was in m diet in my breast milk? Is that why the vomit gets worse some times more than others????
-What type of formula should she we try now? -Any other meds to suggest? - I really don't want to have to go the route of a fundo, as she does gain weight on her curve (although she's at the bottom of the curve - she's consistent).
-When might she outgrow reflux? I asked her pedi this, and she said that kids usually do, but that she has a 7 yr old patient who has it bad still…..ugh.
Uggh, I don't know I'm getting so desperate and miserable - I can't take the vomit any more. I want my baby to smile at me and not be so sad, I'm so tired of doing laundry (or my husband is at least), I'm so tired of always changing my clothes and having to be completely on alert for vomit patrol……I want her to eat!!! I'm tired of the g-tube and the pump. It's so awful to have to hold her while she's attached and carry around the iv pole. I know I have years ahead of me of the gtube…...
New post: OK, thank you ALL for your comments and suggestions....I'm too tired (and covered in vomit) and about to have a total break down to respond and answer your questions-
Basically we tried Neocate tonight, and I thought she was golden, fell asleep, went for about 60cc's then one vomit, then an hour later a huge vomit. I was in tears...went to change her, had her new clean pj's all laid out (I was prepared and hadn't changed her BEFORE the formula just in case), and then she proceeded to pee everywhere, then vomited over my shoulder, all over the carpet, down my shirt, and my DH is out playing hockey.....and yes it's midnight.
But as some of you suggested, this was switching cold turkey....no transition.
My ped says she needs 150 cal per kilo, hence the volume (and she's had fairly consistent weight growth), I wonder why such the big variation between docs? My ped is/was a neonatologist.
-She's ALWAYS upright, she vomits when she's sound asleep as well as awake, (no activity or pressing on belly), she had only a small vomit at her afternoon feed (on breast milk), after a huge one this am...ugggh, I'm so frustrated and exhausted and poor little Kaitlyn.
-there is a nutritionist that met with me when we last saw the gi, but I never met with just her, she sort of nodded and stuff - not much more than that.
-never have tried thickening feeds
-newest post: Well, that was last week that I posted the above and things are WORSE –
We have been trying 50/50 breast milk/neocate with no success. Incredible vomit. So tonight I gave up and for her bolus 6pm feed I went back to just BM and NO VOMIT! Tonight on her night time feed, breast milk only and NOT vomit!
I’m so afraid, because we have only about 1 month left of frozen BM. What do I do.
-I also just read a link on the boards here that her dose of Prilosec is WAY TOO LOW. She’s on 1x/day 6ml and she weighs almost 13 pounds (she just was increased from 5ml to 6ml).
-She’s never had a PH probe.
-She’s always elevated, but it really doesn’t seem to make a difference.
-And some other stuff: she’s never really upset. If this was “true” reflux, wouldn’t she be arching, upset and colicky? She’s not. She can be sound asleep, completely upright (chair upright) and the vomit will come and wake her up, she’ll projectile and then fall back asleep, then more vomit and then back asleep.
-She “burps” a lot, and vomits.
-When she passes gas or has a BM, she vomits
-Should we try Enfamil AR?
-Shouldn’t she be on a higher dose of Prilosec
-She vomited about 20+ times each day for the last 3 days. So tonight back on BM was a huge deal, but I’m almost out!
-If it were allergies, wouldn’t being on neocate solve the problem – it’s obviously not.
-Sometimes she gets these gagging/retching/turning red episodes while she tries to get stuff out of her throat (sometimes it’s just morning phlegm, no milk)
-her vomits are just liquid milk/forumla, nothing digested
-And remember, she HAS had vomiting issues on just BM, but they come and go- and it’s frozen milk, so I don’t know what I ate then.
UGGGGGHHHH, what do I do. My poor little baby. Please help me from having a nervous breakdown. I can’t deal with 20+ times of vomit a day. Sorry this is so disjointed….It’s actually about how my brain is feeling/working right now. I can’t seem to get a straight thought out of my brain that doesn’t have to do with trying to figure out how to make it stop.
There's a video of Kaitlyn vomiting on my blog if you'd like to see it from the 2nd to last post. Well, thanks for letting me vent, cry and scream here…I'd love any suggestions you may have.
Her vomiting is bad. Really bad. I almost posted today a signle sentence: Help, I'm having a nervous break-down. Well, I'm thinking a bit more straight now, but I am going to post my plea for help that I've posted to a few boards - it's a few posts, hence why it's a little disjointed, but here you go:
Tonight I about had a nervous break-down. Seriously. Kaitlyn vomited about 20x yesteray and today. Yes 20 times! this is not spit-up. Vomit! Lots of vomit. over and over and over.
OK, I've about had it with my DD's vomiting, I know she's had it too. I'm absolutely convinced that she's miserable, and would be a completely different baby if I could just get her vomiting to stop. She still doesn't smile - it just breaks my heart. She's an "amazingly good baby" for all the vomiting she has to endure, she sleeps great, is content and generally good natured - she just doesn’t' eat and vomits a lot and doesn't smile or laugh like a 6 mo old baby definitely should.
My Surviving twin daughter was born 13 weeks early, she's now almost 6 months adjusted. She's now about 12.5 pounds. She's in the 5% for her adjusted age.
I'm fed up with her GI doc, I have an appointment with another one, but have to wait 3 weeks. I'm about out of breast milk - Well, I think she's got about a month or more left (frozen).
I thought I'd turn to all of you for help/advice/suggestions: Here's some "medical" background…. -paralyzed left vocal chord (it's "open") . She has a small amount of aspiration shown by her recent swallow study, but I think it was only when she first put food in her mouth, as she's not used to it - once she realized, she actually swallows quite well (as seen by the swallow study). Her first swallow study while she was still in the nicu showed no aspiration.
-g-tube fed (as she's lost all desire to suck, doesn't understand what being hungry is all about). She was always NG fed while in the nicu and when she came home. She USED to breast feed and suck a bottle decently well, she just never ate enough (according to the NICU so always had to be supplemented).
-She was taking a small amount (of cereal and some solids) by spoon, but that has since gotten bad, she now shuts her lips and wants none of it
-She vomits all the time. Sometimes worse than others. When she vomits "bad" it seems to go in cycles. Lasts for a few days.. Just when we think the vomit is a bit better, and even go a feed or 2 without vomit, then she vomits horribly
-She is fed: 3 one hour pump feeds of breast milk vol: 140 over an hour; then for 10 hours at night continuously (700 vol).
-We've started trying formulas, as my pediatrician found out that the GI doc didn't have her getting enough vol and the formula is more caloric than breast milk - she used to be on fortified breast milk, but I think it caused her to vomit more (it was phlegm thick formula vomits that she doesn't have without formula)-----We tried neosure again (that was what she was on as a fortifier and our pediatrician said preemies should be on that for a year (our pediatrician was a neonatologist - she's great); also tried some sort of milk protein digested formula called Allementum) ---when we tried these formulas, we tried them at the "night" feed time. She NEVER vomits during her night feeds on breast milk, it's at a slower rate. Well, on both occasions of the formula, she vomited horribly…..So, even though she vomits on and off with breast milk, she never normally vomits at the night feeds, and it was so bad on the formula - I stopped the feed, defrosted breast milk, changed it over, and then no problem….
-She was on reglan, it didn't seem to do anything-She's never constipated and never had NEC-She was on zantac - didn't seem to do anything, she's now on prilosec Any suggestions for us? Here's a few specific questions - -A question or thought I've always had, could she be having problems with something (diary) that was in m diet in my breast milk? Is that why the vomit gets worse some times more than others????
-What type of formula should she we try now? -Any other meds to suggest? - I really don't want to have to go the route of a fundo, as she does gain weight on her curve (although she's at the bottom of the curve - she's consistent).
-When might she outgrow reflux? I asked her pedi this, and she said that kids usually do, but that she has a 7 yr old patient who has it bad still…..ugh.
Uggh, I don't know I'm getting so desperate and miserable - I can't take the vomit any more. I want my baby to smile at me and not be so sad, I'm so tired of doing laundry (or my husband is at least), I'm so tired of always changing my clothes and having to be completely on alert for vomit patrol……I want her to eat!!! I'm tired of the g-tube and the pump. It's so awful to have to hold her while she's attached and carry around the iv pole. I know I have years ahead of me of the gtube…...
New post: OK, thank you ALL for your comments and suggestions....I'm too tired (and covered in vomit) and about to have a total break down to respond and answer your questions-
Basically we tried Neocate tonight, and I thought she was golden, fell asleep, went for about 60cc's then one vomit, then an hour later a huge vomit. I was in tears...went to change her, had her new clean pj's all laid out (I was prepared and hadn't changed her BEFORE the formula just in case), and then she proceeded to pee everywhere, then vomited over my shoulder, all over the carpet, down my shirt, and my DH is out playing hockey.....and yes it's midnight.
But as some of you suggested, this was switching cold turkey....no transition.
My ped says she needs 150 cal per kilo, hence the volume (and she's had fairly consistent weight growth), I wonder why such the big variation between docs? My ped is/was a neonatologist.
-She's ALWAYS upright, she vomits when she's sound asleep as well as awake, (no activity or pressing on belly), she had only a small vomit at her afternoon feed (on breast milk), after a huge one this am...ugggh, I'm so frustrated and exhausted and poor little Kaitlyn.
-there is a nutritionist that met with me when we last saw the gi, but I never met with just her, she sort of nodded and stuff - not much more than that.
-never have tried thickening feeds
-newest post: Well, that was last week that I posted the above and things are WORSE –
We have been trying 50/50 breast milk/neocate with no success. Incredible vomit. So tonight I gave up and for her bolus 6pm feed I went back to just BM and NO VOMIT! Tonight on her night time feed, breast milk only and NOT vomit!
I’m so afraid, because we have only about 1 month left of frozen BM. What do I do.
-I also just read a link on the boards here that her dose of Prilosec is WAY TOO LOW. She’s on 1x/day 6ml and she weighs almost 13 pounds (she just was increased from 5ml to 6ml).
-She’s never had a PH probe.
-She’s always elevated, but it really doesn’t seem to make a difference.
-And some other stuff: she’s never really upset. If this was “true” reflux, wouldn’t she be arching, upset and colicky? She’s not. She can be sound asleep, completely upright (chair upright) and the vomit will come and wake her up, she’ll projectile and then fall back asleep, then more vomit and then back asleep.
-She “burps” a lot, and vomits.
-When she passes gas or has a BM, she vomits
-Should we try Enfamil AR?
-Shouldn’t she be on a higher dose of Prilosec
-She vomited about 20+ times each day for the last 3 days. So tonight back on BM was a huge deal, but I’m almost out!
-If it were allergies, wouldn’t being on neocate solve the problem – it’s obviously not.
-Sometimes she gets these gagging/retching/turning red episodes while she tries to get stuff out of her throat (sometimes it’s just morning phlegm, no milk)
-her vomits are just liquid milk/forumla, nothing digested
-And remember, she HAS had vomiting issues on just BM, but they come and go- and it’s frozen milk, so I don’t know what I ate then.
UGGGGGHHHH, what do I do. My poor little baby. Please help me from having a nervous breakdown. I can’t deal with 20+ times of vomit a day. Sorry this is so disjointed….It’s actually about how my brain is feeling/working right now. I can’t seem to get a straight thought out of my brain that doesn’t have to do with trying to figure out how to make it stop.
There's a video of Kaitlyn vomiting on my blog if you'd like to see it from the 2nd to last post. Well, thanks for letting me vent, cry and scream here…I'd love any suggestions you may have.
Subscribe to:
Posts (Atom)