Breastfeeding my 2nd daughter

Breastfeeding is suppose to be this natural,easy thing if you listen to everyone else but as a breastfeeding mom, you know this isn't always the case, at least with my two girls it wasn't. My 1st daughter was born at 36 and 6 and even though healthy as can be would not suck to save her life. At the time, the nurses kept telling me that she would get hungry enough that she would suck hard enough to bring down my milk. She did have some latch issues too but mostly poor suck. Well, when Alissa was 4 days old we went back to the hospital, due to her eyes becoming yellow that morning, just to find out she was also dehydrated. Now, I was up all night the night before trying to get her to nurse and she wanted no part of it and would just go to sleep. Following what I was told I figured she would eat as soon as she was hungry. That day I started pumping and supplementing with formula. That lasted until she was a month old when I was producing not even half of her daily needs so I stopped. Flash forward to my youngest.
 Callie was born almost 9 years after her sister so I knew I had more patience and knowledge about breastfeeding that  I could, and would make it work. WRONG. Callie was born at 37 and 1 and minus the clefts on her neck (did not know about the missing kidney yet) healthy as can be but she would not latch. I tried, nurses tried, and even the lactation consultant tried. We could get her to latch using the SMS system but not alone. Have you ever tried the SMS system? It is hard to work alone! I tried at the hospital and spilled breast milk EVERYWHERE! I gave her a bink at 2 days old (in retrospect maybe I shouldn't had) but I wanted to make sure her suck was good since my oldest wasn't.She had a great suck so not the issue. We stayed in the hospital for three days working on her latching every 2-3 hrs and nothing. She would just not do it unless we here giving her breast milk via a tube at the same time (SMS). I decided that day to pump and not wait any longer. I pumped like crazy with a hospital grade pump every 2 hrs for the 1st 2 weeks. After that I bought my own pump and pumped every 3 until she was 6 weeks, At 6 weeks, I dropped the over night feedings because I was exhausted! So I still pumped every 3 hrs from 6 am to 9 pm, but I got the much needed rest from 9pm to 6am. I am proud to say that my daughter is now almost 9 months old and has only been on expressed breast milk. I plan on stopping at 11 months and hopefully have enough stored to take her to a year old. It has been hard, very hard but she is worth it.

Genetic Doctor

December the 10th, 2012 we set off to Vanderbilt at 8am to find out if Callie can be officially diagnosed with BOR syndrome. I will say in all the appointment we have had , they all we are in really fast. This appointment itself took forever but only because they took our whole family tree. They needed to know if anyone on either side had any characteristics of BOR syndrome or any other syndrome for that matter that would explain the birth defects that Callie was born with. Of course, we already knew that no one had anything even close to resemble what out poor daughter was born with. In fact, both sides of our families are really healthy in that aspect. Yes, we have some diabetics and even a few that have dies of cancer. but no birth defects. After taking a full medical history on Callie and taking our whole family tree, they concluded that if Callie did indeed have BOR she had a spontaneous case of it. My husband and I will still need to be tested just to see if we are carries but the doctor doesn't believe we are since there is no family history. Now lets talk about this test. Of course genetic testing is not always a sure thing. In the aspect of science, it is still a new thing but this test is only 40% accurate. So we are putting our hope and faith in a test that may not even tell us what we need to know.  If it comes back positive, she has it no doubt, but if it comes back negative, there is still a possibility she has BOR syndrome. Go figure! My husband actually debated not putting her through another blood stick, the baby has been stuck a lot in her short life, but we decided it was worth a shot to have some answers, hopefully.
 Now some other information about this condition is... reflux.. Why? They have no idea but a lot of children with BOR syndrome have  reflux. Something about how their necks are formed especially the children that have the clefts. So all along she has been treated for acid reflux and been on all these meds and it could be because of this syndrome. Granted the meds can and still do help but since that's not whats causing the problem it won't completely go away until we have the cleft fixed.

We are suppose to go back to Vanderbilt in three months to find out the results of genetic test. It is going to be a long three months for us but hopefully we will find out something. Don't worry I will update much sooner then that. Life it always interesting around here. Maybe I should write about how breastfeeding is not so easy lol.. just maybe?

Kidney Doctor

How do you respond when you hear that your child has only 1 kidney? What kind of life will they have? Does the other one work like it should? So many questions and far to few answers. Well, we were luckily able to get in to see the kidney Doctor pretty fast. November 8, 2012 off we went to Vanderbilt to see what her future may be. Her Doctor was a really nice man that took the time to go over what test we need to do and what he knew so far about her kidney. The fact that the previous ultrasound discovered her one kidney showed its right on target for growth is a good sign. The fact that my daughter was just shy of 7 months and already 18lbs showed that she was growing wonderfully, which is a concern when the kidneys are not working correctly. Obviously we couldn't be 100% positive that her kidney was working well enough to make up for her missing one kidney until we had blood test done. He also wanted to make sure her one kidney wasn't refluxing. That test is called, Voiding Cystourethrogram (VCUG).
             Before we could have the VCUG, we needed to have her blood drawn to find out about her kidney function. Now I am usually very laid back, go with the flow type of person, but I thought I was about to hit the girl. She kept digging all around Callie's arm trying to find the vein. Callie was screaming! It is hard enough to hold an infant down when they stick a needle in their arm, but its much worse when the tech keeps moving it all around their arm trying to find the vein that they swear they can see! After about five minutes I finally had enough. I was furious! Another tech came in and was able to get her blood on the 1st try. I will ask for that girl next time. My poor baby screamed for several minutes afterwards and her arm was bruised for almost two weeks. But on the plus side, her blood results all came back normal:))) So, at this point, her one kidney is functioning  as if she had two.
  Now onto the VCUG. We had this done on Black Friday. Yay.. a way to spend our day right?  I had plenty of time to research this procedure prior too and it seemed painless (according to reports) and pretty fast. I had no idea how being cathed, with no pain meds and being wide awake, can be painless but hey maybe they knew something I didn't. Well let me tell you it was not painless. Callie was talking and happy right up to the time they put the catheter in. OH my! The nurses in the next room heard her scream! My husband and older daughter was in the hallway, they could hear she scream! She screamed the entire time and it was not fast. They had to fill her bladder with a special dye to see if it refluxed back to her kidney. She kept peeing the dye out so fast that they were not ready to take the pictures so they had to keep putting more dye in her bladder. After the 2nd time they were prepared for her. They said she has a very active bladder, I knew that. She pees like a horse all day long lol. Anyways, I cried the entire time, she cried and screamed, but after what felt like a life time, we were done. We got the results the very next morning, and Callie does not have kidney reflux! But, she has a bladder outpouch that can hold urine so it makes her more susceptible to UTI infections that can, in return, hurt her one kidney. Her Doctor wants to wait and see if the outpouch makes any problems before putting her on meds to prevent an UTI. Why, I have no idea, to me that's just playing with fire but what do I know? I am just mom, right? Another plus, since her blood work and reflux test came back great, Callie does not need to be on any special diet. He even said she should be able to play sports and everything as long as her kidney function stays up. We have to go back in 6 months for a recheck. He said that we will keep checking her every 6 months until 2 and if everything is still great then it will be once a year until... I guess forever.

    I am learning that with any syndrome it is always two steps forward and one step back. No reflux and great kidney but a bladder outpouch that can put her kidney in jeopardy.

Introducing Callie

My husband and I already had one child, Alissa. We had tried for years to have another child and finally after several rounds of fertility pills and HCG injections, we were having a baby.  After a very long labor, 32 hours, Callie was born on April 13,2012. Yes, Friday the 13th:) We had no idea prior to that anything was wrong with her. All of my many ultrasounds came back a normal,healthy baby. Immediately after birth the cyst on her neck was visible. At first the nurse said she had a skin tag on her neck. Skin tag, ok I can handle that. That is easily removed later on in life. However, when the doctor checked her out he informed us that she had not only one, but two cyst on her neck.  They are called branchial neck cyst. He told my husband and I that Callie would need to have an ultrasound on her neck to make sure they are closed on the inside but other then that she should be fine. At one month old my breastfed infant developed severe acid reflux. I only mention she is breastfed because breastfed infants are suppose to suffer from acid reflux less than formula fed because it is so gentle on their bellies. It would come out of her nose and mouth in projectile form. The night she turned one month old, I was in the kitchen and I heard her crying but it sounded very muffled. I went to check on her in the bassinet and she wasn't breathing. Her arms were swinging everywhere but still no sound. I picked her up immediately and noticed that her whole face was very wet . I started sucking out her nose and mouth trying to get her to just cry. Her eyes were watering and her arms went still. I have never been so scared in my life. After what felt like a life time but in reality was only a few minutes, yes a few minutes, she started crying. She was purple right before she started crying. I stayed up all night watching her and the next morning she was put on acid reflux meds and an apnea monitor. The monitor was  just in case she had another episode at night and I wasn't awake.
              When Callie was three months old she had another episode at night and my husband and I pushed for her to have an ultrasound to see what was going on inside to make her be spitting up so much. The doctor figured her valve wasn't closing all the way. Well we went to Vanderbilt children's hospital for the ultrasound. We found out it was BUT Callie was missing her right kidney. We were floored. How can a baby be missing a whole kidney and it never be picked up on prenatal ultrasounds. Of course I called where I had all my prenatals and they checked their files and said that Vanderbilt was wrong, she did have both. Hum.. Her Dr wasn't concerned and said we would recheck when she turned one and go from there. Well, at five months old we decided to change her doctor because she wasn't very organized and kept letting things slip thru the cracks. I will be forever grateful we did because that's when we finally started getting answers.
         For Callie's 6 months check up we went to her new Dr and went over Callie's history and our concerns. She immediately thought something was odd for her to have two birth defects and for them not to be connected. She got in touch with an ENT and he gave us the diagnosis that we so needed..but at the same time didn't want to hear. Our baby girl had BOR syndrome. Granted we had to go have it verified but she fit 2 out of the 3 parts of the syndrome. Off to the ENT to check our daughter's hearing which would be the 3rd part. Callie did pass her newborn hearing test but one of the things with BOR is the hearing loss can be progressive. She failed:( The ENT had hope that she failed because of a recent ear infection and that she really could hear. Callie could hear, right? She was already starting to babble. Could she do that if she was deaf? I didn't think so but what did I know. Well three weeks later, a long three weeks, her hearing was retested and she PASSED!!! YES! 90% of children have some kind of hearing loss with BOR syndrome so maybe, just maybe, she will be one of the lucky 10%. Only time will tell but for now she has 100% hearing in both ears.
     

More to come..Kidney Dr..and Genetic Counseling visit.