Wednesday, March 29, 2006

Back home from surgery!

We are back home from the hospital and Kaitlyn is doing great!

Our experience at the hospital still had more problems before we left however. I spent the night with Kaitlyn, we ended up having our own room and the Pediatric Ward nurses and docs were very nice. However, during the night, the nurse changed Kaitlyn’s IV bag incorrectly, and hung a bag that didn’t’ have any dextrose. This means that she didn’t have any food (besides electrolytes) and when the day nurse realized it at 10 am, she immediately took a blood sugar level and Kaitlyn had extremely low blood sugar (think, Diabetic shock!). They quickly remedied the situation, though, and hopefully she won’t have any ill effects from it. But, my goodness, how in the world can this kind of thing happen?

I was able to carry her into the operating room, of course I had tears streaming down my face. The Pulmonologist was there to do a bronch scope on her (and they want her awake for that, as they want to make her cry (how terrible) so they can see what her vocal chords do). I decided I didn’t want to watch, so I left her in the Operating Room’s capable hands, but it was so scary and terrible!

The Pulmonoloigst came and talked to us shortly there after and confirmed that Kaitlyn’s left vocal chord is indeed paralyzed – he said the good thing is that it is paralyzed “open” meaning that she can breathe. But, it seems likely to me that is what is causing her not wanting to eat, as when a person swallows, we close our vocal chords to keep what we are swallowing out of our lungs, If only ½ of her chords can close, that would make milk go into her lungs. She did have a swallow test while she was still in the NICU which showed she didn’t’ aspirate (milk go into her lungs), so I think it’s only intermittent. We usually find she seems to aspirate a bit when she throws up, as it goes down her lungs. If she was really aspirating, should probably would be very sick at this point, as fluid in the lungs causes pneumonia, and she’s still healthy.

What’s the outcome of having a paralyzed vocal chord, will she be able to speak? Only time will tell. It may heal on it’s own, or it may never heal. If it doesn’t heal sometimes the chord that works learns to over-compensate and move all the way over to the chord that is paralyzed. It’s our chords touching that allows us to speak. If this is the case, she will likely have a horse voice permanently, and she will likely have speech delays obviously.

The paralyzed chord seemed to have been caused from the PDA heart surgery she had when she was 4 days old. (if it were caused from the ventilators it would likely be bruised, swollen, etc), and the doc said it looked fine. During the PDA ductus surgery that she had a risk is damage to the chord nerve from either nicking or cutting it. The reason she had to have her PDA closed was that she was born to early and a babies heart in utero has this valve open so that the amniotic fluid can circulate, as that’s what the baby breathes while in utero, once the baby is born, the valve closes which makes sure that fluid doesn’t go into the heart/lungs. Many preemie babies have to have their duct closed either from drugs or if the drugs don’t work from the surgery that Kaitlyn had. Was this another Doctor error? We’ll never know.

After that, she was put under General Anesthesia and put on a ventilator! This is what scared me the most. I was afraid with the condition of her lungs that she may not do well after wards and have to stay on the vent.

Thankfully, she did really well, and they were able to remove her from the vent not long after surgery! This was great news.

The surgeon came out to talk to us and said the insertion of the G-tube went great. He put the scope (so he could see the insertion) through a cut he made in her belly-button, and the g-tube is inserted directly into her stomach a bit higher and to the side of her belly button.

It was bigger and stuck out more than I thought it would, but from my understanding the type they used is actually the lowest profile G-tube “button” that there is. It’s called a Mik-key.

They first started using her feeding tube with Pedialyte and she seemed to handle it well, so throughout the day yesterday, they increased her intake of fluids and then switched to my milk until eventually we gave her the full feed she was taking before we left for the hospital, and she handled it like a champ. We had some small spit-ups but because it went so well, we were released to go home last night at almost 8pm.

The nurses taught us how to feed her with the g-tube. The nurse told us that were as parents were the easiest she’s ever had to show (maybe it’s because we’ve been feeding her with the NG tube for 2 months now). It’s a different system than what we did before, but it does seem to be easier, the milk flows so much faster (too fast, we have to slow it down so she doesn’t get too full too fast), and no more ugly tape and tube on her face! It’s so nice to see her beautiful face with nothing on it. Just think, since she was born, she has ALWAYS had something on her face. Since 10/4/05! Except for the few times that it was pulled out (usually be the little peanut herself). The tube had caused a red indention on her cheek that will hopefully go away. It’s looking better today already.

Now, 5 feeds into being home, I wish I could say that she hasn’t thrown up, but that’s not the case. She has continued to throw up, only time will tell.

With her vocal chord issue, this could be a definite long haul for us.

She really seems to be feeling good and recovering nicely!

Kaitlyn didn't fit her baby "hospital gown" very well. This was in the room where we undressed her and the nurses prepped her for surgery. I was a nervous wreck.

Here I am holding little Miss Kaitlyn.

We were taken into the surgery area (gowns only permitted) and whisked into this Doctor Conference room. Brian and I sat there for about 10 minutes before the anethesiologist and Docs came in to talk to us. You can see how I'm feeling now. Kaitlyn however doesn't seem to be all that concerned, she's sound asleep. I was given a surgery gown, hat and shoe covers and allowed to carry her into the operating room. I didn't watch her be put under, as they had to do the bronch scope first, which I didn't want to stay and watch.

This is yesterday, about 24 hours after surgery. We had just fed Kaitlyn through her new G-tube for the first time. You can see her G-tube on her belly. You may have to click on the picture to view a large copy of it. The skin colored stuff around the "button" will go away, it is there to help protect her skin for a week or so.

The hospital knitters (women who make and donate hats and blankets to sick babies) made this cute hat. We put it on Kaitlyn as we were about to happily walk out the door! Here is Kaitlyn's goofy face again, I think she was happy to go home too!

Dad's got a ghotee growing while he's off on Paternity Leave. While in the fire department he can't grow one as the oxygen mask he has to wear fighting fires wouldn't get a good seal (that's you never see firemen with beards). He goes back to work in 2 more weeks.

Monday, March 27, 2006

sooo frustrating

Well, we showed up at 8am this morning at the hospital (for Kaitlyn's 9 am scheduled surgery) to be told by the surgeon that there had been a big mistake made and that Kaitlyn can't be readmitted to the NICU (during RSV season). I assumed they had verified that, (as had the surgeon). so basically, we had to scramble around and try to feed her (we were at the hospital without her feeding apararuts as we were planning on going in to surgery). She hadn't eating since 3am and was extremely upset (tried to breast feed - forget that idea).

The problem is also that the Pulmonary doctor was also scheduled to be there to check out Kaitlyn's paralyzed vocal chords when she was under, so I'm not sure where things stand with that. What a bummer.

I went down to the NICU to get another feeding tube and started crying when I saw one of the docs there.

Now that we have to have the surgery had a different campus, we will be spending the night, so we hurriedly drove the 20 miles back home to get our stuff and will shortly leave again for the city to try again.

I couldn't sleep all night, due to nerves about the surgery, as much as I want it, I'm scared shitless. She vomited like crazy yesterday, it was so frustrating. When I pulled out her tube this morning before we left for the hospital, I was so happy to finally forever be removing the tape on her poor cheek and the terrible tube. Then we had to go and put it back in again.

Well, we are about to leave to drive the 2o miles back to the city again.

Also, they informed us that they won't have room in the PICU there, that she will be on the main floor. That's scary to me.

Thursday, March 23, 2006

Surgery is Scheduled

Well, Katilyn's surgery to have a G-tube inserted is scheduled for Monday morning next week. The pumonologists will also be involved, as it will give them a chance to look at her vocal chords when she is under the general anethesia. Yuck, another ventilator to help her breathe while she is under.

I sadly am getting sick....Let's cross my fingers that she doesn't get it from me as we want her as strong as possible before her surgery.

She'll be going back to the campus where the NICU is for her surgery- yeah!!! We really tried to have her go back there, as I feel like it will be her big extended NICU family taking care of her in recovery.

Saturday, March 18, 2006

Long Awaited Update

Grandma Markie "Mame" took this great picture of Miss Kaitlyn this week! Miss Katie has some of the funniest expressions! She has the pout down pat, Not quite sure what this expression means, but it sure is goofy!! She's propped up on the couch.

It’s been so hard to find time to update my blog (as I’m sure you can tell). Welcome to motherhood I guess!

Here are some updates on Kaitlyn’s many doctor visits these last few weeks:

Pulomonologist – Her Chronic Lung Disease seems to be ok, meaning that her breathing and lungs don’t seem to be having many effects from the disease, she doesn’t have any fluid in her lungs. This is the reason that we have to be at home hibernated, as if she gets sick, things could go bad very quickly, especially if she were to get RSV (the cold/flu thing that most children get that isn’t much worse than a regular cold in a healthy baby but could be deadly to Kaitlyn).

We have a test scheduled on Tuesday to check her lungs In a decreased oxygen environment. This test puts Kaitlyn in a similar environment that she’d be in if she were to fly or go to Tahoe (high altitude). This will allow us to determine how diminished her lung capacity really is. They will basically put a tent over her head, reduce the oxygen level to that similar to high altitude, and see how she does. This test is scheduled for Tuesday of next week.

The Pulmonologist is also the doc that keeps an eye on her paralyzed vocal cords. It is still paralyzed. The doc heard her cry and agreed that the noise is primarily air passing, rather than a vocalized cry. Brian and I “joke” and say that she would be the perfect baby to go to a restaurant, movies or fly with, as if she were to get upset, you can’t hear her cry – however, of course we can’t go out in public! Sort of bittersweet!

Developmental Specialists - Because Kaitlyn was born so small (a micro preemie at 1 lb 11 ounces) she is eligible for programs called Early Intervention (EI) in which preemies development is closely monitored to help with any delays. It’s great, as they actually come to our home (makes it a lot easier with all our other doc visits). We’ve had 2 EI specialists visit with Kaitlyn. The first is funded thorough the Government, the other is through our NICU hospital (CPMC). It was wonderful to have them come assess her and their initial assessment they said that her head is indeed very strong for her age and that she does great on her tummy (2 months adjusted), she’s not smiling yet (they said it’s still ok at this point), and that she seems to be right where she should be for 2 months adjusted. So, so far, that was some great news to hear.

Feeding Clinic – we went to UCSF to a preemie feeding specialist and unfortunately, we didn’t lean “the problem”. I think I’ve now had to come to terms with the fact that we are never going to find out what the problem is with Kaitlyn and why she doesn’t want to eat.

We’ll see the feeding specialist again in 3 more weeks, she told us to do gum exercises with Kaitlyn, which means to rub our finger on her gums to give her positive oral experiences rather than the negative experiences she currently has. (vomiting, tube, pain from reflux, etc) I’m so scared for the long term feeding issues that this is probably going to result in.

Since we’ve come home, her desire to nipple has gotten much worse. Initially she was doing well and taking more of her feeds on her own, but then all of a sudden, she has stopped wanting to all together; she also has no desire to suck on her pacifier any more, which she used to love when she was upset. She no longer has any interest whatsoever in her pacifier. She gags, thrashes and basically pouts and acts pissed off.

Her constant vomiting I’m sure isn’t helping matters at all. The poor little thing. It hurts me so much to see her in pain.

She’s now on different types of reflux medication, I’m not sure if they are really helping at all: She’s on Reglan (which is supposed to help the food exit her stomach faster, but can have neurological side-effects (scary); and was just switched from Zantac to Prilosec (another anti-acid). Her esophagus is probably getting scarred and damaged from all her stomach acid with all her vomiting. She is still projectile vomiting at some times (and then other times she might keep her entire feed without any vomiting). Other times the vomit is more dribble like. It’s awful. We feel so bad for her, as she looks up at up helpless like, and it’s really hard on us too.

Every feed takes about an hour, and you cross your finger that she doesn’t puke up everything you just got down her feeding tube. Sometimes when she gets really upset (in pain) during the feed, she thrashes and cries, so that the milk goes backwards instead of into the tube. It’s very difficult. The only way to help is to pour out the remaining milk, disconnect the tube, untape it from the bouncy, take her out, burp/consol her, then put her back and start over again. It’s awful watching her in pain and you can’t really help until the feeding is over. Terrible.

GI Specialist – This appointment was for the GI doctor to assess her stomach, to see if they can figure out why she is vomiting and to talk about inserting surgically a g-tube. She didn’t give us much reason for the vomiting (uggh), but she did go over the 3 ways that a G-tube could be inserted. We know now that we HAVE to have a g-tube, and we want to get it done ASAP. We know that her NG tube is probably making her vomiting and her nipple aversion worse. In the beginning when we first came home it really seemed as if she was going to start eating on her home with the nurturing environment at home as compared to the NICU, but then with her getting worse, we know we don’t have a choice.

As much as we are dreading going back to the hospital, admitting Kaitlyn, having her go under general anesthesia, having a breathing tube, we are crossing our fingers that the g-tube will be better than the NG tube.

I’ve heard from so many preemie moms that have all said the G-tube is so much better than the NG-tube. (G stands for Gastric, and NG stands for Nasal Gastric). The g-tube will be a button type thing that will be in Kaitlyn’s stomach and we will open it up to put my breast milk directly into her stomach.

We have an appointment with a General Surgeon on Monday to schedule her G-tube insertion. Hopefully she can get us in next week for the surgery.

Ophthalmologist – Kaitlyn had a 6 week follow up appointment to check on her eyes and ROP (Retinopathy of Prematurity – the eye disease that is common for preemies that can cause blindness). As a reminder, Kaitlyn had level 3 ROP, and had laser surgery (3 hours) to stop her retinas from detaching.

At this follow-up visit once again the eye doc said her ROP recovery looks great and he also said that he doesn’t see any initial signs of bad near-sightedness, which could be showing up at this point. (think: small babies with glasses). He said now, we’ll wait a year (I think) to check her nearsightedness again as well as ongoing ROP follow up visits.

Pediatrician - In addition to the above, we also go weekly to the pediatrician for a weigh in. At Kaitlyn’s latest weigh-in, she now weighs 8.5 pounds! We’ve officially “retired” the preemie clothes as she’s grown out of them. 8.5 pounds sounds like a lot, but remember, Kaitlyn is now officially 2.5 months old and she weighs as much as many “newborn” babies do.

What else has been going on?

Well, it’s been almost 2 weeks now since we had to put Kailan (our dog) to sleep. We are still very teary eyed and miss her terribly.

I’ve been back to work fairly full-time and have a house in escrow for some clients. My real estate firm had it’s annual “Awards Luncheon” yesterday that I attended. I was shocked to find out I won an award for production last year. This is quite a feat I have to say, in that I was only able to work ½ the year due to my unplanned forced bedrest. If you know of anyone looking to buy or sell their house, please think of me! I can help anywhere in the US, not just locally in Marin.

Working on preparing and sending my monthly email real estate newsletter – this takes a LONG time! If you’d like to receive a copy of it, just email me and let me know, or click on the link to my real estate website

Brian’s mother was in town for the last week (Her grandmotherly name choice is “Mame”.) Kaitlyn is her first grandchild and she was so happy to spend time with her. WE loved having her here and she was so great to help us with cooking and cleaning and washing of the non-stop parade of vomit encrusted clothing/cloths, towels/our clothes, etc.

Brian’s Dad comes in today (they had some poor planning on their part, as Brian’s mom left yesterday.) On this note, some more bad news that we are recently dealing with – Brian’s dad’s dad (Brian’s Grandfather) is not doing well health wise. He lives in Pittsburgh PA. He hasn’t been doing very well for the last 12 months or so, but he has suddenly gotten much worse.

I’m still pumping breast milk. I’ve decreased my number of pumps a day to either 4 or 5, but it’s still difficult. Imagine this: trying to feed Kaitlyn at 2 am, hoping she doesn’t vomit as I need to pick her up from her bouncy seat (in which we tape the NG feeding tube to the top of the bouncy) and pumping at the same time. Not easy.

Working on preparing and sending baby announcements and long-awaited thank you notes.

I’ve been trying to get my taxes finished on top of everything else. You think with all the time I had lying in bed all summer that I would have gotten my finances in order, but I hadn’t done anything, and I had a lot of expenses as far as real estate and obviously medically. You should see the pile of bills and mail that I have yet to get to for the month!

Well, sorry for the delay in updating my blog, but we knew Kaitlyn’s fan club would understand!

This is the sight that Brian saw this morning upon his awaking...I'm typing this blog entry, have the pump aready at the end of the couch and the bouncy seat on my other side getting ready for the next sleep. Kaitlyn is sound asleep on my chest, which is the position she favors after eating.

Here I am giving her some reflux medication 30 minutes before her 10am feeding.

a close up of her bald spot and mom in her bathrobe

Grandma Mame loves to bundle Kaitlyn. Can you see the 3 or 4 blankets here! Kaitlyn is clasping her hands here in front of her, this is a good developmental sign. She won't be reaching for toys or things for many months still.

More blankets and more funny expressions from Kaitlyn (look at all those blankets!)

Here's Grandma Mame with Kaitlyn. You can see she is even "bundling" Kaitlyn in this picture. You'd think we lived in Alaska or something!

Proud Grandma Mame again with her first grandchild (or Margaret, who Corinne Margaret is named after)

Brian, his mom and Kaitlyn

Horsing around with Katie

Proud Mama and Dada with our daughter. She is looking bigger in these pictures.

Wednesday, March 08, 2006

Good-bye Kailan

On Monday, March 6th, we said good-bye to our best friend Kailan.

It's incredible how much you can love a dog and how much they become a part of your life. Everything we do reminds us that she's no longer with us. From her basket of toys, to where her dog bed was, to dropping a morsel of food and now needing to pick it up, to her wagging tail greeting you whenever you left the house, to her searching out my where abouts in the house... Kailan has been in my life as long as Brian has, about 5 years, which means I've been in her life for almost half of it, but she's been in Brian's life for 12 years, since she was a puppy.
We are both devestated by her loss. We were lucky that we found a very caring vet to come to our house and make Kailan as peaceful as possible. She got up off her dog-bed just minutes before the vet got here, where she hadn't gotten up off her bed all day without assistance. She knew. We were both crying over her bed and I think she knew how worried we were so she rallied, got up, wagged her tail, and gave us both lots of kisses.
We wanted Kaitlyn to grow enough to realize that Kailan was there. But we do like the thought of Corinne and Kailan forever playing together in heaven and watching over our little family.

She will be forever missed.

Kailan looking at us in Tahoe a few years ago

Kailan at our wedding (hoping for a piece of wedding cake?)

Kailan was our ring bearer at our lake-side Tahoe wedding

Kailan with our wedding rings around her neck

Backpacking with Kailan at the campsite

Monday, March 06, 2006

Even worse today

Well, after my early m0rning post, things have gotten much worse with Kailan, our dog. She now can hardly even walk, she seems to have lost the movement or strength in one leg overnight and Brian is having to carry her out to go, (which is all the time becuase of her liquid diarrhea problem) - what a good dog she is, she has never once gone in the house, poor thing. My heart is just aching right now. Neither Brian nor I can stop crying.

We are making arrangements so that she won't have to suffer any longer. Brian and I like talking about Corinne and Kaitlyn being together and playing and watching over Miss Kaitlyn.

This is the first time I've asked, "why me?" I am a believer in good things happening to good people.

Mount Vesuvius and a tough decision

Well, our little Mount Vesuvious (aka - Kaitlyn) is quite a vomit queen. We've really had our hands full with her, trying to get more milk to stay in before it erupts out.

Just a quick post with some pictures and tell you our really sad news.

Last night, Brian and I made the extremely tough decision that we don't think there is anything more we can do for our dog Kailan. I went to bed with tears running down my cheek and am crying again as I type this. She's been sick now for so many months, we've tried everything, including expensive surgery, but she is just not getting any better, and for the last 2 weeks seems to have taken a dramatic turn for the worse. She is so skinny, it just breaks my heart to see her. We don't want her to suffer and want her to be as comfortable as possible, so it's probably going to be time to have to put her down. Oh my.

Brian has had Kailan since she was a puppy. She's now 12 years old. She has became so dear to me, since I've been with Brian, she's become sort of my dog, as she follows me around the house everywhere, and Brian always says that she seems more excited when I come home then when he does. She has been such a good dog, this is such a tough decision. We wanted Kaitlyn to grow up to meet and and play with her. She was our true first child.

I like to think that Corinne and Kailan will be able to play together in heaven.

We have quite a few doctor appointments this week:

-Kaitlyn has to get her 2nd Synygis shot tomorrow (to ward off RSV). Again these shots are around $1500 each, and she has to get them every month during the winter months this year and next.

-A developmental specialist is coming to our house on Wed for EI (early intervention) preemies
tend to have developmental issues, and it's important to try to catch them as soon as possible. I'm really looking forward to this, so we can see how she is doing.

-On Thursday she has a follow-up eye appointment to check on the status of her ROP (eye disease for premature babies which can cause blindness). If you will recall, she had eye surgery while she was still in the NICU. I'm not sure at this point if the eye doc will be able to start telling if K will need glasses.

- On Thursday she also has a GI appointment and hopfeully a feeding specialist appointment also. She is NOT doing well as far as feeding goes. Besides the on and off vomiting (usually on), she is not wanting to nipple much at all on her own any more. This is very, very troubling. It's far from getting better, it's really getting worse.

I've been fairly busy with real estate the last week or so, I'm really having to get back into work, as a lot of the child care duties have been falling on Brian. We trade off at taking the night shifts.

Last Thursday Kaitlyn weighed 7 pounds 14 ounces. She is now 2 months old adjusted, or 5 months since she was born. (This means she should be acting like a 2 month old baby to put things into perspective). Most 2 month old babies weigh well past 10 pounds. I think 2 month old babies should be smiling (Kaitlyn isn't yet). The developmental meeting on wed will be interesting to see how she is doing.

Here are some pictures from the last few weeks.

Well, Dad says she gets it from me, but Kaitlyn has a really good pout already. Look at the lower lip! She doesn't smile yet, but she sure knows how to pout!

Kaitlyn in non-preemie clothes and in her swing

Look at the fireman's daughter!

This is what Kaitlyn looks like when she's "eating". The milk is in the tube taped to her bouncy seat (the bouncy seat is a life-saver when it comes to feeding her). She is draped in burp cloths ready for the inevitible eruption. And thankfully at this time she's asleep (enough time for me to get the camera). Normally she starts getting really agitated, which is signs of trouble "brewing." I sure wish I could be a "typical" mom and just roll over, grab my daughter, put her to my breast and then go back to sleep. No. this is what we deal with every 4 hours. It's tough.

Look at those cheeks. She doesn't look like a preemie any more.

A very happy dad about to take the night off and go to a hockey game with his fire man buddies.

My mom Corinne, visiting Kaitlyn for the first time since she's been home. My mom couldn't get enough of holding her grand-daughter.

Brian talking to his sister (aka Aunt Elissa) on the phone in front of the beautiful tulips she sent to celebrate Kaitlyn's home coming.

When Brian and I took Kaitlyn to UCSF a few weeks ago for the urology test, it was a beautiful day in the city and we were on the 6th floor. Just thought all those folks from all over the world might like to see a bit of San Franciso on a clear winter day.

This picture shows Marin (the hills on the other side of the bay, which is where we live).

Mom, holding Kaitlyn's car seat.

Ok, I think you can better understand how sick our dog, Kailan is in this picture. She is shaved from the surgery she had over a month ago. Every single rib and bone is showing. I liked this picture, as she was laying under neath Kaitlyn, protecting her. I think it's Kailan that needs protecting right now. She just breaks my heart. I can't type this for the tears in my eyes.