I will always trust my instincts!

I have always had a “motherly” instinct with Isla- I knew I was pregnant before I even missed my period. I knew I was having a girl. I knew she would come early. I knew she was sick. I have been spot on every time. So I should have listened to those same instincts after her GI appointment. I didn’t have a good feeling about this doctor from the moment he opened his mouth- I should have trusted my gut but I thought by not following his orders I would be risking my daughter’s health. So I formula fed Isla and stopped nursing all weekend- knowing that this was not what was best for her. I was a wreck all weekend- crying when she was hungry or ate, feeling guilty about breaking my “elimination breastfeeding diet”; I couldn’t even talk about it without tearing up. It felt so wrong- it was wrong. I just knew!


So I did some research online on different reputable website and reached out to a group I am a part of on a community board (Baby with Food Sensitivities/allergies) and I realized that I was right. So I made an appointment with Isla’s pediatrician- we had that appointment today.

This is what the pediatrician said: If I am willing to stay on this diet (which I totally don’t mind) then I can continue to breastfeed. They only sent me to the GI because they wanted him to see if there was anything else that was going on (we already knew about the food allergies and have been successfully dealing with it), not to re-diagnose and change the treatment plan. Also- the GI I saw in that particular practice is one that they do not recommend their patients to go see as he has had issues like this in the past. The pediatrician said Isla is gaining weight (albeit slowly) and she is obviously not malnourished and has great brain development and fine motor skills. They are more concerned with the fact that she is not getting any taller which could be a problem with her thyroid. They ordered a blood draw for 1- her thyroid and 2- an allergy screen. We did the thyroid one already today and will do the other on Thursday since it required too much blood to be drawn on a baby of her size in one day. We should get the results back in a couple days for the thyroid. The pediatrician also recommended that we start Isla on a daily probiotic mixed in a bottle to help her belly issues. She said that since Isla does not eat grains, meat or yogurt (due to her immature digestive system) that we should give her 2 ounces of formula in a “sippy cup” once a day as a snack. She also said that Isla nurses too often and not for long enough so she is only getting the high protein thinner foremilk- she is basically “snacking” and not emptying a breast hence not getting enough fatty hindmilk. So we will work on that. She reiterated that Isla should only have fruit and veggies (and possibly cheerios in month or two) until she is a year old.

Can I just say that I LOVE Isla’s pediatricians. They match my style of parenting to a T! They are so encouraging and helpful. I couldn’t be happier with them!

Bittersweet appointment

So today was the day of Isla’s appointment with the pediatric gastroenterologist. They started off by weighing her and checking her length. The results were unsettling: at 2 days shy of 8 months old she weighs 13 pounds 4 ounces (a 1 ounce increase in 8 days) and she is 25 ¼ inches long (no change in a couple months). The doctor examined her and asked me some questions. He then told me that he was confident that she has a severe food allergy to something I was eating that was making it into my breastmilk. He said that although breastmilk is best that he wants her to go on formula. But not any formula will work- only 1 kind is available for her and he said “it is very expensive”. He gave me some samples of the formula (EleCare- amino-acid-based, hypoallergenic formula that is specifically designed for infants and children with special feeding issues) - it is only available on their website or through special order through the pharmacy. It costs double or triple what a normal formula costs- and my insurance will likely not cover it! The doctor said that he wants to see her in a month to check her growth- fingers crossed that is works for her.

This appointment was bittersweet for me. The sweet: I am beyond happy that the doctor thinks Isla’s stomach issues are caused by a food allergy and nothing too serious. I am relieved that we did not have to do any invasive tests. I am hopeful that she will start to feel better. The bitter: I am heartbroken to have to stop breastfeeding. I was telling Trevor the other day that I plan to keep breastfeeding Isla past my original goal of 12 months. I love nursing Isla- the feeling of being so close to her. Breastfeeding makes me feel so bonded to her. It is something that only I can give her- it was the one thing that was all mine. I hate that I don’t get that anymore. I hate that the choice was made for me. I am not ready to stop but I have to follow the doctor’s orders. I feel guilty (although the doctor told me it is not my fault and that I should feel proud and not guilty because most Moms would not go on such a strict diet for such a long time like me) that her stomach problems were caused by something I did. I feel uneasy with the decision to stop breastfeeding- right now I don’t feel like it was the right decision for my baby although I am sure this feeling will pass. I wonder if the doctor is right. It doesn’t help that after feeding her formula for the first time tonight that she spit up 4 times (not like Isla at all to spit up) and was grunting and growling in discomfort. I hope it is just gas but wonder if I made the wrong choice. Before I was confident in the decision to breastfeed (even on the strict diet) but now I feel so unsure. I am just taking this day by day and hoping for positive results and hoping I start feeling better about everything.

Our next appointment is September 27 (my wedding anniversary) and we are hoping she grows! Please keep Isla in your thoughts! Love you all!

Children's Miracle Network Radiothon

Each year Tucson Medical Center and the Children’s Miracle Network host a radiothon to raise money for the different departments of TMC that cater to children (peds, NICU, pediatric therapy, children’s ER). Being that my mom works at TMC- I would usually help out as a volunteer (answering phones, setting up, training other volunteers). This year I was invited to participate in it again- but this time not as a volunteer but as one of the featured families! Isla and I (and Trevor too if he can get off in time) will be on the radio telling Isla’s story! We already went to the radio station and did our pre-recorded interview and we will do our live interview on air in a week on Thursday August 26th, 2010 at 4:00pm. We are so excited and nervous too!

Isla was born at TMC- though it is not the closest hospital to my house it is my OB’s hospital. Isla also goes to TMC’s pediatric therapy. I have always known how important the radiothon is to the hospital since they are a non-profit hospital they rely on donations but I never thought I would utilize the very services that the radiothon raises money for. The money raised stays at TMC and is spread among all the units for children. I am so thankful for TMC’s commitment to children and can’t imagine if the Pediatric Therapy unit did not exist. I hope you all listen to us on the 26th and I encourage you to call in and make a donation (you can make it in honor of Isla!)- you never know when you yourself may be in need of their services just like me.

Here is a little bit of info on TMC and the radiothon:

** TMC for Children includes the region’s only dedicated Children’s Emergency Center, the only pediatric hospice, the only pediatric special care unit, and the only pediatric Gastrointestinal Laboratory. TMC for Children also includes inpatient and ambulatory surgery programs with dedicated pediatric anesthesiologists and child-life specialists. And, TMC for Children includes the hospital’s acclaimed Newborn Intensive Care and Pediatric Intensive Care units.

**Children’s Miracle Network is an international non-profit organization dedicated to raising funds for 170 affiliated children’s hospitals. Over the past two decades, local Children's Miracle Network campaigns at TMC have raised well over $10.6 million, all of which has remained here in Southern Arizona to support TMC children’s services.

**Tune in to 92.9 The Mountain from Aug. 25-27 for Jennie & Chris's Mountain of Miracles Radiothon benefiting TMC's Children's Miracle Network. Listen to the live three-day broadcast from TMC's Children's Emergency Center and call in to make your donation to the Children's Miracle Network.

Tight neck, flat head- HELMET!

At Isla’s 2 week appointment her pediatrician said she had tortocolis, plagiocephaly and brachycephaly. She said it was from how Isla was positioned inside me during my pregnancy. She gave us a handout on how to do neck stretches.

**Tortocolis is when the muscles in her neck are wrapped to tightly around the bone causing the head to tilt to one side. Tortocolis cause plagiocephaly and brachycephaly.

**Plagiocephaly is when the head is flat on one side (the opposite side of the tortocolis neck. The flattening of the head causes the ear on that side to become pushed forward and is usually lower or higher than the other side. It also causes the bones in one side of the face to push out as well which can affect the jaw, nose and eye from working properly.

**Brachycephaly is when the head is wider than it is long which basically just makes the head look funny.

So Isla has all three of these conditions. We did the stretches at home as well as we could since we only learned how to do this off of a handout. At each appointment her pediatrician mentioned to keep up on the stretches and said if it didn’t improve enough she would have Isla in physical therapy. We were diligent in doing the stretches but by the 4 month appointment her condition had only slightly improved so we were given a referral to a physical therapist.

We started physical therapy right away. The physical therapy is located at Tucson Medical Center (where Isla was born and where my mom works). On a side note TMC is probably the best hospital in Tucson. The care they provide is amazing and they have a focus on children- and they are a non profit hospital. Isla’s therapist is Charlene and she is amazing! She taught me so much about Isla’s condition and how important the physical therapy is to her development. Unless you experience it yourself you have no idea how involved the therapy is and how it affects everything she does. Not only do we take Isla to TMC regularly for therapy but we do it at home all day, every day. We can’t skip days because as she grows her condition will worsen. So we do the physical therapy daily to keep her muscles from getting tight around her neck. Isla’s condition also affects her development. Without regular therapy she would favor one side of her body causing the other side to become weak which will prevent her from rolling, sitting, crawling, standing and walking. This is why it is so important to do therapy everyday and to make it a part of her daily routine. With Charlene’s help Isla is rolling both ways, sitting like a pro and army-style crawling- we are working on getting her on all fours!

The physical therapy has done wonders for Isla’s tortocolis but has not improved her plagiocephaly enough so we were referred to a cranial orthotic specialist (aka the helmet people). Isla was fitted for a helmet and is currently wearing it now. She will wear it for about 4 months for 23 out of 24 hours a day. We only take it off to clean it and to clean her. The helmet works with her growth spurts. The helmet is symmetrical- it lies against the high spots on her head and there is a gap over the low (flat) spot. So as she grows her head will fill in the gap and become symmetrical.

I know this is a lot to take in but I feel like I must educate people about her condition. Please feel free to ask me any questions- I am happy to explain. I want people to know that when a baby is wearing a helmet it is not just for cosmetic purposes- it is a preventative measure for future developmental and medical problem that come along with having plagiocephaly.

Dealing with colic

When Isla was 2 months old I was noticing she was crying A LOT and had some mucus in her poops. I brought it up to the pediatrician’s medical assistant and we figured it was because she was starting to teeth (she was drooling a lot too and biting things). It kept happening so I called again and spoke to someone else and they said it was because she was getting over a cold and her sinus’ were draining into her stomach since she could not blow her nose. But it never let up. Finally I decided to bring in a dirty diaper with me to her 4 month appointment and they tested it- it came back positive for blood! I should have listened to my instincts! Isla has colitis! Her intestines and bowels were inflamed and bleeding. It was caused by a food sensitivity she had- I am breastfeeding her and the foods I was eating were making her sick. I had to go on a strict elimination diet. I cut out dairy, soy, nuts, wheat, eggs, beef and pork! It was extremely hard but she started getting better. After 3 1/2 months her diapers finally came back negative for blood! I was cleared to introduce wheat back into my diet. She had a slight reaction to that but after a few days she seemed to be doing fine. Then I introduced egg- that is where the trouble began. We were back to square one with the colic behavior. She was up all night screaming and crying. I stopped eating eggs but she is still acting sick. My poor baby- I hate seeing her so sick. I just want her to be healthy.

Tiny baby

Isla was born 3 weeks early so we knew she would be small but we never expected her to be so tiny. Even the doctors were surprised to learn that she was only 5 pounds 4 ounces. Within a few days of her birth we had an appointment at Isla’s pediatrician. There we learned that Isla’s weight had dropped to 4 pounds and 13 ounces- they were a bit concerned but told us that she needed to be back at her birth weight by no later than her 2 weeks appointment. I was nursing Isla and made sure she ate every 1 to 2 hours- let me tell you I was exhausted! By her 2 week appointment she weighed in at 5 pounds 7 ounces- we just made it! Because she was so small and had problems gaining weight I had to bring her in to the pediatrician’s office every week or so to monitor her weight. She was gaining weight but slowly.

We kept a close eye on her and she was doing very well. She was always between the 3rd and 5th percentile- her doctor told us that just as long as she stayed on her growth curve there was no reason to be concerned. She said that some babies are just small like Isla. She stayed on her growth curve for a bit and after starting her on solid foods at 6 months we expected her to gain a little more but instead she kept right on the same path. We kept up on regular weight check appointments as well as her “well baby” exams because she is so small and had other health issues we needed to be monitoring.

Yesterday (8/12) I tool Isla into the pediatrician’s office because her colic had gotten worse. They weighed her and at 7.7 months she only weighed 13 pounds 3 ounces which meant she completely fell off the growth curve. She is now just under the 1st %. Now they are concerned and are sending us to see a pediatric gastroenterologist. I am very worried for her and I hate waiting for this appointment which is in a week. Isla has been acting sick for a few weeks now and it has not let up. Every night she screams and cries and is acting like her stomach hurts. She tenses up and arches her back when you hold her against you- she basically throws her self backwards. It’s like she doesn’t want anything touching her stomach. She is inconsolable at night. I am trying to be strong for her but it is so hard to see her like this.

How we began

After 6 months of blissful marriage my husband, Trevor, and I decided that we were ready to start a family. I stopped taking birth control and we decided that we would leave it up to fate. "Whatever happens happens" was our philosophy. Well it happed- the very next month! We were thrilled!

My pregnancy was great- I felt great. Up until 36 weeks everything was very normal and uneventful. At my 36 week appointment my OB told me that I was suddenly measuring very small- she sent me for an ultrasound and we determined that our baby girl was petite (around the 30th%). A week later in the middle of the night my water broke- it was time! I was overcome with emotions- anxious to meet my baby, scared of labor, nervous about how my life was going to change, excited to become a mom. After 20 hours of intense, up and down labor- Isla Jayde made her debut at 9:25pm on December 22, 2009! I immediately started crying and I think everyone else did too! We were over the moon! Isla was tiny- weighing 5 pounds 4 ounces and measuring 17 ½ inches! She was in the 3rd%. After a couple days in the hospital Mom and baby were sent home- actually it was Christmas Eve!

 

We had an amazing Christmas and I quickly settled into my new role as Mom. Trevor and I were so in love with Isla and we loved being parents to our beautiful daughter. We couldn’t ask for anything more. We found ourselves staring at her when she slept and kissing her all the time. I loved seeing him as a Dad- he was amazing with her. We were such a happy little family!