Cayden Update

Hi Friends,

Thank you all so very much for your prayers and encouraging notes. Below is a copy of an email my sister sent out regarding their appointment with the pulmonary specialist:


Hi Friends,

Thank you for the many sweet e-mails and phone calls concerning Cayden. We feel very fortunate to have supportive friends who are praying for us.

Here's the scoop. We are actually doing fairly well right now. The shocking news has sort of set in and we are becoming educated on what life is going to be like for our little guy. Fortunately, the prognosis looks promising. If it wasn't for the newborn screening that was implemented in California in July 2007, we probably would not have known about the disease until later in his life. Prior to that time, a diagnosis of cystic fibrosis in a baby was usually due to "failure to thrive". In Cayden's case, he is thriving. His pancreas is working normally, producing the necessary enzymes for nutritional absorption, and he is gaining weight. The doctors will be taking a stool sample at 6 and 9 months to make sure this continues to be true. He is in the 97th percentile for both weight and head size and the 90th percentile for height. I told him he has a little catching up to do on his length:). Dr. Pian, the lead pulmonologist at Children's Hospital and department head of the CF clinic, said that he would be very surprised if Cayden suddenly had pancreatic insufficiency. He has followed multiple children with the same two mutations of CF that Cayden has, so he has a pretty good idea of what the outlook will be. That was relieving to us.

Some people wonder why we want to know know about a disease that may not affect Cayden for years. Dr. Pian shared that in cases like Cayden's if there is not an early diagnosis, parents continue to wonder why it takes so long for their child to recover from colds and infections. Then after numerous bouts with sinusitis and other bronchial infections, allergy testing, etc., a doctor might consider the possibility of CF. Once the child or teenager is finally diagnosed, he/she most likely already has lung damage. Early diagnosis will help us make decisions for Cayden that will avoid damage to his lungs.

Dr. Pian said he expects Cayden to live a pretty normal life, and with today's technologies and resources he should live well into adulthood. Of course, Flack and I are praying that a cure is discovered in his lifetime. Either way, continued discoveries will be made about CF as Cayden grows and therefore we foresee an even longer life span than predicted now. There is a lot of research going on in the field. Here are some other things we found out at our last appointment:

· We asked if Cayden will be able to play sports and the doctor said absolutely. He will just have to be on a regular hydration schedule because his body excretes more salt than ours.

· The team kept emphasizing that people who are around Cayden need to wash hands, wash hands, and wash hands again because although his immune system is not necessarily weaker than the average person's, bacteria collects more readily in the dryer, thicker mucous that is present in CF patients. Therefore, respiratory illnesses can be tougher on Cayden. In fact, the doctors may prescribe more aggressive antibiotic treatments when he does get sick and we are supposed to notify Children's Hospital when he contracts any sicknesses. Cayden will have to get a shot once a month to help him avoid a respiratory virus that is pretty common. The doctor told us it costs $900 a shot. Thank God for insurance!

· Dr. Pian told us that San Diego has a good environment for CF patients, but not to be surprised if Cayden is hospitalized a few times during his lifetime. For example, when the fires happened in SD, there were many CF patients hospitalized. (Flack said we will be evacuating if that happens. Who wants some house guests?:) Also, Cayden will go down to Children's Hospital once every 3 months for a swab test on his throat to see if any threatening bacteria are in his system.

That's all I can think of right now. Usually new CF patients have to go back to the clinic once a week for the first month, but because Cayden's health is excellent right now, we don't have to go back until next month.

Of course we are saddened that our little boy has to endure this disease. Like all parents, we want the absolute best for our Cayden and it will pain us to see him struggle. Nevertheless, we are encouraged at the outlook. It doesn't seem that he will live as a sickly child which makes our hearts lighter. As some of you may know, his name means "companion", but it also means "fighter" - appropriate I guess.

Thanks again for all your support and prayers!

With love,
Sara

CAYDEN - means Fighter and Companion

Yes, it has been a long time since I last blogged but for good reason. Life has just been busy and overwhelming. The easiest way for me to write this is just to paste in the email that I sent to some friends on November 26th.

It is with a heavy heart that we write to tell you that our little Cayden (my sister Sara's 6 week old newborn) has Cystic Fibrosis. The Maguire’s received a call last evening from the head of the Cystic Fibrosis Department of Children’s Hospital informing them that his test numbers are clear indicators. The good news is that he has a mild form and he is gaining weight (this means that his body is processing food adequately – many children with CF have trouble gaining weight). The next step is to have more testing done and meet with the team of doctors who will care for him. By the way, the doctor who broke the news to them was very caring, professional and compassionate with Flack and Sara. We trust our Gracious, Mighty God to lead the Maguire’s down this difficult path. “His rod and his staff they comfort me.”

Today they go and meet with the doctor to see what life looks like for Cayden. This is such a sad and scary time for us. Please pray for the Maguires!

In regards to my little Gianna she is doing great! She is sleeping 6 to 7.5 hours at night and then an additional 3 after that. She is so easy and healthy. I will post pics when I have time.

Some New Pics

It has been way too long since I last blogged. Life is starting to really look up. Gianna is doing so much better... All that soy formula has finally processed through her system and she is much happier. She is no longer in constant pain from gas and she is also not blowing us out with her stinky toots. I know it sounds funny but when she had her first breast milk poop we were so happy. Before her poop was like clay so to see a good healthly poop made us so happy. Since that time she has been doing 10 times better... she has her fussy periods but no longer does she cry out in pain. I am pumping and feeding her about 6oz of formula a day. Here are some new pictures of her...she is starting to smile but I have yet to capture a good picture. Thank you all for your encouraging comments on my last post it really means more than you will ever know.

PS I now understand what other people meant when they blogged about how bumming it was to still be in maternity clothes. I so wish I could wear my regular clothes again.

Joy, Tears, Laughter and Trials!

Being a mom is a wonderful roller coaster of joy, tears, laughter, and trials. It has been almost 5 weeks since Gianna was born and it has been quite the ride. I fall in love with her more each day. I just completed four days of being a single mom. Mr. F works 12 1/2 hour shifts so he gets home around 7:00 pm and goes to bed by 9:30 pm. He sleeps in our guest room because with his line of work he has to be rested. When I did the first four nights by myself I was a wreck. The benefit of his schedule though is that he is now off for three days in a row.

I am learing that many many moms can relate to my struggles with breast feeding. I like all moms desire to give me daughter the best start possible in life and for me that = breastfeeding. The problem is that when your child goes into the NICU for their first week of life things start of very backwards. To start Gianna was fed large amounts of formula (by bottle) because she needed to poop and get out the jaundice. When I did feed her they had me wear a nipple shield because they said my nipples were too flat. Today I know this was not really the case it is just something they hand out like candy to most new moms because it makes it easier for you to tubal feed your baby formula while they are latched on. I was also pumping at home while I was away from her and then again tubal feeding her my breast milk.

The reason why this has made things hard is that Gianna is used to getting her food very quickly and since she is so used to the nipple shield she get's mad when I don't use it. There have been times when I have fed her for an hour and a half with that dumb shield and she is still hungry afterwards. For the past two weeeks I have refused to use the nipple shield and have been doing a lot of pumping and bottle feeding. I do some breastfeeding but sometimes she get's so mad that it is not worth it. So my nights and days often consist of breastfeeding, bottle feeding and then pumping! This process is exhausting.

The other issue is that Gianna has stinky man farts and they are causing her pain. We are taking her to my chiropractor and he is helping her a ton. The use of the vacuum to get her out of me messed up her alignment and Dr. Shores says studies have found that most babies who deal with colic are out of alignment. He adjusted her on Friday and she was so peaceful and happy the rest of the day. Don't worry he does not crack her neck or back he uses a gentle tool that taps her bones into place.

I am working on getting Gianna as much breast milk as possible but I have to supplement with some formula. I just don't produce enough milk to support her needs. In the hospital she was on soy formula because I am lactose intollerant and I was afraid she might be also. I think this might be one of the causes of her gas. So as of 5 days ago she is only getting breastmilk and maybe 6 oz of Nutramgin a day. Yes, the super expensive stuff!

I have been given so much great advice and the thing that seems to be working the best is just trying to get her as much breast milk as possible. I feel like a cow pumping all the time but she is so worth it. I am so thankful for the friends and family who have encouraged me and helped me see that breastfeeding is not the end all. I just really like the idea of not having to pump, having her food with me at all times and not having to pay for formula. There is also something very special about connecting with her in this way. I am praying that once her gas get's under control and she is less colicky the breast feeding with improve but we will see. Every day I seem to have a new resolve based on how things are going and how tired I am.

So that is my new mom update! Sorry if this post was boring for most people. Here are some pictures of Gianna and her cousins.




Zachary and Cayden (born 10-10-08)
Cayden Edward Maguire 10-10-08, 10lbs 11 oz (my sisters son)

Cayden and Gianna

Question for all Blogmamas

Hi Ladies,

Gianna has her nights and days mixed up. She is up every night from 10:00 to 1:30 am. Crying fussing and so on. Any suggestions on how to get her to sleep at night and not some much during the day? Or is this just the way it is with a newborn?

Random Stuff

First I want to say thank you to all the people who left me comments on my last blog. It was so encouraging to hear your stories, your words of wisdom and to know I am not alone. In the midst of sleep deprivation and anxiety it feels so good to be heard.


Random Story #1:
My week started off really rough. On Sunday night I had a really bad tooth ache. The weird thing is that it was in a tooth that I have had root canaled twice and had four crowns put on. So there are no nerves which makes having a tooth ache quite odd. So on Monday I went to the dentist at 2:00 and he told me that he tought I should go see the endodontist. So I headed over to him. He took an xray and told me he tought I had a cracked root and at this point I should just have the tooth pulled. Well, I had not eaten much that day because of the tooth pain and was of course very tired and missing Gianna. So I then went down stairs to an oral surgeon and had my tooth pulled. It was the worst experience and one that I have always had a major fear of.

Random #2: Has anyone watched the DVD or read the book"The Happiest Baby on the Block?" I got it in the mail yesterday and have had success with his techniques for calming a crying baby. I am hoping it will spill over into tonight and that she will sleep really well because of it.

The Delivery and the NICU

Okay so this blog is much over due... This is the story of Gianna's birth. Please forgive the typos and mass grammatical errors that you will soon encounter as I am tired and typing with Gianna sleeping on the my brest friend that is strapped around my lap.

On Saturday I had braxton hicks all days long and was starting to loose my MP. Then on Monday 9-15-08 I woke up at 4:40 am with a really bad contraction but after it passed I was able to go back to sleep. I woke up again at 7:19 with another contraction and told Mr.F I thought my labor was starting. He got out the stop watch and we started to time them. After a while I was tired of being timed and wanted to take a break. Frank decided he ought to leave and hook up with his friend who was going to check and make sure we put the car seat base in correctly.

I decided while he was gone to call my OB and see what he said. I told him how far apart they were and the pain level. He told me I needed to wait until they got worse and then call him. About an hour later (5:30 pm) the pain level had really increased and we called my OB again. He suggested we meet him down at the hospital. Driving in the car was really not fun. All I can say is the contractions were similar to having really bad menstrual cramps. All I wanted to do was sit on the toilet so I could get some relief.

After we arrived at the hospital a nurse came in and checked me to see how far I was dilated. This was an awful experience. I had no idea how badly it would hurt to be checked or how far they would shove their hand up there! Worst of all she told me I was only 1 cm dilated. Kind of embarrassing since I was in so much pain. About an hour later my OB arrived and he also checked me. This time I could not stop the tears the pain was just too much. The good news was that I was 3 cm and 90% effaced.

So he told me I could either go home and he would give me a sleeping pill or I could stay here and get an epidural. I am sure you can guess that I chose to stay and get the meds. I was pretty nervous about getting the epidural but it was no big deal. I was lucky that I had the head of anesthesiology there to give it to me. From there it was all a waiting game. At about 2:00 am my water broke and I was fully dilated. I pushed for an hour to no avail. Turns out she was sideways. Not sunny side up but sideways. So my ob had me wait and had them have me lay on my side and then switch every 1/2 hour to see if she would move. By 7:00 when he showed up she still had not moved. So he had me start pushing while he tried to get her to turn. Finally after 2 hours of pushing he had to use the vacuum. I was so bummed because I did not want her head pulled like that. But the reason he had to was because I spike a 102.9 fever! So after using the vacuum he was able to pull her into the birth canal and then I pushed her out.

It was so amazing because I got to actually pull her out and put her up on my stomach. I was crying so hard I could barely even see her. My mom and Mr.F's mom were both hugging and crying while they looked at her. She was born at 9:24 am 7lbs 6 oz and 20" long. The nurse who helped deliver her was amazing (she was actually nurse of the year) and of course my OB was fantastic. I think most other OBs would have done a c-section but thankfully I did not have to. He was so patient and we did all kind of techniques for pushing that midwives use.

So now the info on why she went into the NICU.

1. She could not maintain her body temperature it kept on dropping - sign of infection

2. She is B positive and I am O positive blood type - because of my long labor our bloods mixed and my blood formed antibodies to fight off her blood. So she had antibodies fighting off her B blood

3. She was cumms positive for jaundice

4. She had a big hematoma on the back of her head - collection of blood in between her scull and skin.

All of these factors meant she needed to be on Antibiotics via a IV and spend time under the lights. When they took her to the NICU it was the worst moment for me. I just sat and cried. That night in the hospital Mr. F and I sat and cried together.

Over all the experience in the NICU was really great for what it was. The nurses were super sweet and caring. They taught us a lot and I also had visits with a lactation consultant daily. We had to leave the hospital on Friday so we stayed at my parents house the remainder of the days and went to the hospital early and came home late. Gianna did 7 days of antibiotics and on Tuesday 9-23 we took her home. Before we left we went into the healing garden at the hospital with our families and my Dad dedicated her to God. It was very special time to share with our parents.

I still need to write about what it's been like since we got home but I am all blogged out for now. I will say that breastfeeding has been sooooooooooo hard. Taking a baby home from the NICU makes BF 10x worse. The reason is that to get rid of jaundice they have to get them to poop so they feed them tons. So when you take them home it is so hard to train them to only BF and not expect so much food without any work (IE a bottle). Today is a good day but almost every night I have the fall aparts. I have an amazing lactation consultant that I am emailing with daily who is helping me make it through this transition.

Thanks for reading this really really long post. Jewels