Pseudomonas

Ethan's culture from last week's clinic came in yesterday and it showed that he had grown a bacteria called Pseudomonas Aeruginosa. This is one of the bacterias that is especially harmful in Cystic Fibrosis patients lungs. We've been hoping and praying that he wouldn't get it for a long time. It's inevitable that he was going to get it eventually.

As soon as I saw the result on the Kaiser website I emailed Ethan's pulmonologist to ask her if it was the bad one then I called one of my friends who has a son with CF to ask her opinion. She couldn't remember which pseudomonas was the bad one either. Luckily after a call to the pediatric pulmonary nurse, Ken got her on the phone and just as she was talking to him our pulmonologist came down the hall to tell her to call us. We are lucky that our team is so aggressive in treatments. This is why we have cultures and appointments every 3 months so we can catch bacteria before it continues to grow.

Pseudomonas Aeruginosa is found all around us. It's in soil and even water. It's very hard to not come in contact with. In fact, everyone by the time they are an adult have pseudomonas in their bodies. It effects patients with CF more severely because of all the sticky mucus buildup in their lungs. It's hard to get rid of.

Ethan was started on a new nebulizer called TOBI for the next 90 days and an antibiotic called Cipro for the next 14 days. Unfortunately, the Cipro can only be found quickly in pill form so we have to crush it and mix it into his food. He's onto us. We've got to figure out a new way to get it in him or hope we can get our hands on some of the liquid soon.

This all is very stressful. We're worried about Ethan and how we're going to get rid of this bacteria. I hated putting him to bed last night knowing that the bacteria was just sitting in his lungs. In 6 weeks we'll go back for another culture and hopefully it will come back negative. If it's positive Ethan will have another round of antibiotics. Either way we'll be doing TOBI for 90 days to ensure that it's gone. After the 3 months are over, Ethan will go in for a brochoscope to check to see if the pseudomonas is completely gone in all of his lungs. If it's not he'll be hospitalized for IV antibiotics. The pulmonology team is very optimistic that they will eradicate it from his body. I just hope it's sooner than later.

Unfortunately, Ethan can get pseudomonas over and over again throughout his lifetime. It's when it makes its home in his lungs that he will have problems. We're hoping and praying that the next 3 months will go smoothly and that we will beat pseudomonas!!!

Thanks for all your prayers! We can feel them.

This is a photo of Ethan doing TOBI for the first time. It was also his first time using a mask. He fought us for 20 minutes kicking and screaming but in the end held his own nebulizer to finish the treatment. Today we had success with both of his morning nebulizers. He barely fought us. I think we're headed in the right direction.

Clinic Update

We went to clinic on Wednesday to see Ethan's team. Overall, it went very well. Ethan had only gained 1.4 oz in a month, but he still gained and held steady in weight so they were happy. He gained an inch in height! He's a little guy. He's in the 25th percentile for height for his age and 30th percentile for weight. Those are both still considered good since that follows his natural progression on the curve. I guess at some point his pediatrician was worried about the size of his head, but now it's slowed down.

We met with his pulmonologist and discussed how hard it has been to get Ethan's Creon (enzymes) into him at meals and snacks. For those you that don't know he needs the enzymes to help him digest his food. Without them or without enough of them he will lose weight and it will cause his stomach to hurt badly from have digestive problems. Dr. P said that we should work towards getting him to swallow the capsules by the time he's 2. That amazed me, since I can't imagine him doing that until he's closer to 3 or 4. We'll see in a few months if he's capable of it. For now, we continue to struggle with getting the enzymes down and getting him to eat more table food. He's a very picky eater and sometimes he won't even eat what we know he likes. The doctor says it's normal for kids his age to be picky. He basically drinks his calories. We know he's getting enough at this point because of the weight gain.

We went over his bloodwork. Thankfully he wasn't anemic. That came as a shock to me since he won't eat meat. I guess he's eating something that's helping with that. His Vitamin A levels were high so they will monitor that and retest in 6 months. Overall his blood tests looked good. They took a lot of blood for his yearly tests 3 weeks ago.

Dr. P decided to increase his enzymes to 17 Creon 6's instead of 14. The hope is that it will help him gain weight. We will be constantly be changing up his meds as time goes on to see how that helps him. For now, they have been increased and as long as we can get them down him we're hoping for weight gain over the next month. A weight check was ordered for October 12th.

We met with the new social worker for the CF Clinic. She was very nice. We don't have much of a need for a social worker at this time because emotionally, financially and physically we are all doing well. It's nice to know there's one there for us if we need something.

The dietician was out for the day so we didn't get to speak with her but it was okay since we didn't have any questions for her.

We're all set to go back for another CF Clinic in 3 months. Ethan's doing pretty well. He hasn't cultured pseudomonas which is great! We just got his cultures back from clinic. Everything looks good, but one thing that I'm not sure about. I'll update the blog when I know something.

Weight Check

On Wednesday, we went to see the pulmonologist for clinic. Dr. Leong said that Ethan sounds really and for the time being we can stop nebulizer treatments. We are still doing the vest and just started doing it for 20 minutes twice a day.
They weighed him and he was 13 lbs 4.5 oz & 23.5 inches long. He's in the 60% for proportionate weight to height and in the 30% for weight & 30% for height. Dr. Leong and the dietician were pleased with his growth. We will be starting rice cereal and a few others in less than 2 weeks. I'm really excited to put him in his highchair which will probably be way to big.
Here are some pictures of him in his jumperoo. He can't jump because he is still too short so I have to do it for him. He seems to like being in an upright position to see the world from a different angle.

Life As A New Mom

I love being a mom! Today Ethan is 7 weeks old. We just went to the Pulmonologist's office yesterday for a clinic and Ethan weighed in at 11 lbs! I can't believe he's gained 2 1/2 lbs since birth. He's also 22 inches long! My little boy is growing so fast. Yesterday we met with the pulmonologist, the dietician, and the social worker. I was pleased to hear that he has completely recovered from the Brochialitis! The dietician told us that as he gets older he will be able to eat normal food. We will need to make sure he eats a well-balanced diet and that what he eats is high in nutrients. We will have to keep him away from juice, soda, tea and eventually coffee. We were told that Cystic Fibrosis kids tend to not eat a ton so what they do eat needs to be high in nutrients and that's why they want him to stay away from drinking anything other than water and milk. Kids who drink a lot of juice, soda, etc. tend to not gain the weight they need to and CF kids tend to not gain a ton of weight anyways. We are very happy that he is growing very well and that proportionately he's in the 68th percentile with the goal being to keep him over 50%.

Ethan and I are beginning to ease into a routine. He's such an easygoing little guy. I think his personality is a lot like Ken's. He is calm, social, talkative, and laughs a lot! A few days ago I laid him down on his playmat and he talked and laughed at a picture of a rabbit for 10 minutes. It's so fun to watch him learn new things and to take everything in. He loves to have conversations with us too! We'll ask him something and he'll coo back and laugh. It's really funny! I'll have to get a video and post it in the next week or so.

I really wish that we could afford for me to stay home with him full-time, but it will probably be unlikely. For now, I'm on maternity leave for who knows how long. I have an appointment with the postpastum therapist on Monday to extend my disability as long as possible. I'm hoping that in the end I can get an extension of 8-12 weeks and then I'll have Paid Family Leave on top of that. If all goes well I'll be off through the end of the summer PAID! I joke about wanting to get as much time out of the state money, but really I medically need it. I have postpartum depression, which is even more common in people who have Bipolar disorder. I've been managing with Zoloft and trying to take it easy. I've learned a lot of coping strategies through the years and especially over the course of the last year and a half being off meds. I will be going back on my medication soon since I've stopped breastfeeding altogether. That's a whole other post :) It usually takes a few months for meds to start to take full effect and we have to start all over now that my body has changed through pregnancy. I'm hoping it can be done fairly quickly, but also that I can have more time paid with my baby. For now, we're doing pretty good and we'll have to wait and see what comes next.

I'll post more pictures later in the week. He's growing so fast!

Breastfeeding & a Good Sucker!

We've been having breastfeeding drama lately. I never knew there was so much to breastfeeding that needed to be worked out to make it completely successful. Ethan latched on right after he was born no problem and was born with a really good suck. So strong in fact that he sucks a little too hard.
This may seem a little too personal, but I'll try to keep it light. We headed into see the nurse practioner and lactation consultant on Monday for his 4 day appointment only to learn that he had lost 12% of his body weight since birth. We were told that we would have to supplement with 1 oz pumped breastmilk or formula after each feeding. Meanwhile, Ethan had already gone to town destroying my nipples because of his powerful suck and because he wasn't latched on properly. I was a little concerned, but hopeful that we would fix everything and he would gain weight.
We came back the next day for a weigh in and another appointment with the lactation consultant. He had gained 6 oz in the last 24 hours. We were really happy and figured he would continue to gain really well and be at his birth weight soon. He was doing so well that we then were told to supplement every other feeding and come back on Friday when he was 8 days old.
On Friday, he had only gained another 1/2 oz in 3 days. I was discouraged and getting a little more concerned. The lactation consultant reassured me that he was gaining weight just slower than we had hoped for. He looked very healthy and we had nothing to worry about. I had been feeding him with a nipple shield to let my nipples heal for the 3 days prior and they were finally healed so I could go ahead and nurse without it.
Unfortunately, by this last Monday he had completely destroyed my nipples again and they were worse. We waited for an appointment on Wednesday and when he was weighed it showed he had only gained 3/4 oz in 5 days. I started crying in the doctor's office because I felt so responsible and guilty. Again, I was reassured that we could still fix this and that he was still gaining weight, just not as fast as we had hoped.
I was advised to stop nursing to give my nipples a chance to heal again, pump every 3 hours and feed him with formula and the pumped milk. It was very sad to think that I wouldn't be nursing him for 5 whole days. I was told that he wouldn't have a problem going back to the breast. It appears that my son does not care where he gets his food...he just wants it. He evidently doesn't suck correctly and this is common with many newborn boys. We were told it's not to late to train him and that boys just take longer to figure it out. We'll start suck training early next week and hopefully be back to the breast soon. We are 24 hours into this new arrangement and I do like that Ken can do more feedings and Ethan eats faster with a bottle than from the breast so I sleep more. Ken does not sleep better because he actually has to get up now to feed him while I pump. Luckily, I have a ton of milk and pump what Ethan needs to eat at each meal.
I have no doubt that we will go back to weigh him in the morning and he will have gained a few ounces and by Monday he'll have gained much more. It's nice to be able to see how much he's getting from the bottle.
I have to keep reminding myself that even if breastfeeding doesn't work out, that my son is happy and healthy. We have a very good baby who sleeps at least one 4 hour block during the night and who sleeps in his own bed. Even when he wasn't getting enough to eat, he was still happy (as long as he could suck on something).

Still waiting...

39 weeks.

No baby yet! It's funny how a few days ago everyone started asking if he's here yet! Nope, we'll let you know ;)

Ken & I are very ready for Ethan to come already. The house is ready, we just need a baby. I keep making guesses as to when he'll arrive, but I'm wrong. My body is definitely getting there, but since I've never had a baby I have no idea how close I am. I've had some contractions, but nothing regular. Sometimes they are a couple days apart and other times I've had 3 thirty minutes apart. At my 38 week doctor's appointment last week the doctor said that Ethan was at a -3 station, so at the top of the birth canal, and he was dropping, but had a ways to go. I think he's made progress since then or maybe that's just wishful thinking. She also said she believes he'll be between 7 and 8 lbs at birth if he comes on his due date. She thinks he'll be here on the 15th or a few days after. Luckily, my doctor's office automatically schedules an induction between 41 and 42 weeks at the 40 week appointment if they don't see significant progress. At least that way we'll know there's an end in sight. I really hope we don't have to be induced because I'd like to go into labor on my own and with induction there's more of a chance of a c-section being needed.

Unless I'm late this will probably be my last post until he arrives. Keep your fingers crossed that he's not late.

10 more weeks!

10 more weeks until baby Ethan will finally be here! Sometimes it feels like it's coming really fast and other times it's really slow.

We went to an all day childbirth class yesterday and learned some really good relaxing techniques. I really like the birthing ball, which is basically just an exercise ball. I'm hoping to use it at home when labor begins and hopefully take it to the hospital with me. After taking the class I am more excited about the process and although I don't think anyone really looks forward to labor, I'm excited to meet my son. I'm so curious to see who he looks like and I really want to hold him.

I have 6 more weeks of work before I go on maternity leave. I'm happy that I will have some time off before the baby comes. It's also a little bittersweet because I'll be leaving 5 little kids behind. I have been watching the Weaver's 3 kids for almost 3 years and I've been with the Jones' for almost a year. I'm really going to miss my kids! This is the beginning of a new chapter of my life where I will no longer will I be taking care of other people's kids. I'm looking forward to having a normal, steady work schedule at an office in May or June and being home with Ethan 2 days a week. The plan is for me to stay off work until the end of May/ early June and after that Ken's mom is going to take the baby 3 days a week so I can go back to work.

At my last doctor's appointment I had officially gained 24 lbs. At a pound a week it looks like I will most likely be at around 35 lbs when he's born. I took the glucose test on Tuesday and I don't have gestational diabetes, but I am anemic so now I'm taking iron supplements. Oh, and I'm measuring a week ahead, but that could just be because he's bigger than normal.

Lately, Ethan has been moving more and more. I can feel every twist and turn. He likes to move the most between 7pm and 11pm and every time I move from side to side at night he kicks around to get situated for a few minutes. I'm mesmerized by the fact that he is going to be 3 1/2 lbs by the end of the week and 18 inches long and he somehow fits inside my belly. We are both doing great! I feel more tired now than I did last trimester. I can get up at 8am and by 10am I'm ready for a nap. 6 more weeks until I can actually take that nap. I can't wait!