Category: Baby Number 2 / Maternal PKU journey 2

Baby Number 2 / Maternal PKU journey 2

15 weeks!

Posted on by Amanda Horner

Hello Bump! I see you and I feel you! Oh boy do I feel you!

I have been struggling . This is way harder this time. My tolerance has not moved, it is still so low. I am really wanting real food.  I would sell my Liver for some mashed potatoes, some rice, some sweet potatoes, some hash-browns,  a big huge rice bowl with sauteed veggies!  anything. I am so sick of eating the same thing over and over and over again. Everything I am eating is sugary crap . I only really get 2 meals cause I dont have room for more. If I eat breakfast it takes away from dinner when i am most hungry.  I havent had fresh fruit or veggies in weeks. I didn’t think i would miss them so much lol

Right now i am at 240 mg phe and 2000 calories. I get 138 mg phe just from formula so that leaves 102 mg for food. I use anywhere from 0 to 35 between breakfast and dinner and save the rest for dinner. I have had trouble getting calories in so i have been filling up on Gatorade and lemon pudding .  This is so crazy low for me. Even when i am on diet and tracking phe I usually get 400 to 500 mg phe but then my levels are usually 8-10 . For pregnancy they need to be under 5. Mine have been sitting around 2 for weeks. They wont up my tolerance until they fall under 2 twice.  I am mostly eating low protein bread and pasta.

I know I am complaining and I know it will get better. I know it is so worth it to. But heck its hard. It is so much harder. Honestly I know why I failed as a teen and why I cheated and why I never could stick to such a strict diet.  I am working so hard for my baby and to make sure im doing every single thing in my power to make sure just as i did with Madelyn that im giving him or her the best chance at a healthy life. SO the suffering will endure.  Hopefully in a few weeks my tolerance will start to go up.  I think it was about 18 weeks with Madelyn that it spiked finally. It feels so much longer this time. I feel so much bigger.

I am 6.8 lbs heavier then I was with Madelyn at this point . I started this pregnancy 5 lbs heavier then where I started my pregnancy with Madelyn . I am currently 186.8 as of this morning. I was 195 on the day I got pregnant. SO just like last time i lost weight in the first trimester.

When I got pregnant with Madelyn i was 190 lbs and i went down to 180.  I was 217 on the day she was born.

This time I started at 195 and ive lost 8.2 lbs

I feel like im carrying lower to then with Madelyn.  I have always believed the myth girls carry high and boys carry low. However i think you also show lower with 2nd and other pregnancies.  Just like with Madelyn i feel like its a boy. But i thought that till about 22 weeks with Madelyn and then was 99 % sure she was a girl . I swore i seen the ultrasound and had a really good feeling. It drove me totally nuts not to know so i am very happy to say we are finding out this time. I know in my heart this is our last baby so i want to experiance it both ways.

Here is a side by side photo of me at 15 weeks with Madelyn vs today.

 

Madelyn on the left and today on the right.

I am hoping for another little girl .  The idea of 2 sisters and 2 little girls is a dream of mine . Boys terrify me but i am sure i will adjust and that really matters is baby is happy and healthy.  I know your not suppose to want either way but I cant help it.  I am finding out in April because i need to know and i need time to prepare, and I know it really sounds terrible but im trying to be very honest , if its a boy , i will need time to adjust. I dont want to find out on the day its born and be dissapointed or anxious or stressed or a bit sad. I just want to enjoy and celebrate this baby.  I am already so anxious about adding another baby to our family,  on how Madelyn will cope and adjust to going from an only child to sharing everything, sharing life and sharing mommy and daddy. I feel guilty for all the changes she has coming. I worry about life with 2 , juggling a newborn and a toddler. Not being able to sleep when baby sleeps like with Madelyn. When it was just her and i , those early days blurred together. night and day did not matter and we just slept and adjusted.  Oh the sleep deprivation! wow! i cant imagine having to stay away with to be with Madelyn while having a brand new baby !  So i am doing all that i can  to lower my stress in advance. to lessen my chance of any post partum depression or anxiety.  I feel like the more information i have, the more prepared i am, the better equipped I will be to handle the early days.  I am getting a lot of flack from feeling this way and from finding out the gender before hand, some view it as bad luck, I know I shouldn’t have to explain myself or justify my reasons but i am finding out . I would not if cole was not on board. i cannot keep secrets from him , i could not know and not have him know. SO i am glad he is giving me this this time.   We are hoping they will tell us when we go for our fetal echo and cardiogram at BC women’s hospital in Vancouver in April that they will tell us then. So it will just be cole , Madelyn and i finding out together.

Madelyn swears its a baby brother as she calls it. She is very adamant and has not changed .

I still havent heard the heart beat with a doctor or midwife. I have a home Doppler ive tried a few time, i think i have picked it up but dont feel totally sure. My next appt ( march 12th) is the 1st appt with our OBGYN Dr. Baickie so i bet i can hear it then. Hopefully cole will be with Madelyn and I .

Then I have our second midwife appt the following day.  So maybe i will hear it both times lol

I am just getting over having a gastrointestinal flu. I actually ended up in the emergency at the  hospital Tuesday night . I was lying on the floor crying with horrible abdominal pain. After having had diarrhea and extreme nausea since Saturday. The pain was getting worse and worse and I couldn’t take it. I was getting worried. SO my best friend took me in to the emergency while cole stayed home to put Madelyn to bed. I had also gotten a sinus infection the same day so i was a real mess. The nice thing was is they did an ultrasound right then and their to check on baby so me and my best friend got to see baby! it was a nice surprise since our first scan was at 8 weeks 4 days and our next is not til 2 weeks 3 days.  We didn’t get to hear the heartbeat but we saw it beating away and the doctor said it looked really strong and healthy.

I am feeling much better now and finally able to breathe better too.  My daycare was closed all week because of it. Luckily Madelyn did not get the tummy flu but she had a bit of a fever and cold for a few days. Cole came home from work Thursday with the abdominal pain and not feeling to good. hes better today though.

We have been going swimming every Saturday. Madelyn has swim lessons so cole goes with her and i swim laps for 30 mins during their lessons. It feels great to be in the water. I have always loved the water.  It relaxes me. I can spend hours in a bath with a good book.

I had wanted a water birth with Madelyn and was really dissapointed when i was told no because of my pku and being high risk. when she was born they told me it went so well that if i ever had another i could totally do it. I am not to sure now that i want to thought because i really needed the drugs with Madelyn lol I hadn’t wanted them and had tried to go with out but at the 29 hour mark i needed them haha. Good thing cause it was another 7 hours after that.  So i think i will need them again haha.

I have register for prenatal yoga starting in April when the roads will be nicer and the snow will be gone and it will be light out at night again.  With madelyn i only made it till about now because it turned to winter and i wont drive in the snow or dark. That will be nice about having a summer baby. I can do yoga and swimming and stay active longer. I totally have not been active other then swimming once a week.

I have to decided to close my daycare at the end of the school year to spend the summer making memories and enjoying madelyns last summer as an only child. As well as working on renos around the house and of course the nursery. Cole is having to give up his office and we are going to have to build him a new one either downstairs or in the sun room. He wants them to share but i feel that madelyn is already going to have to share so much and have so many changes come her way, i want her to have her own space and her own room to go to whenever she wants to. i want her to have a safe space and to feel comfertable. When they are older if they want to share then they can. I was 9 when i started to share a room with my sister. who is 3 years younger then me. Only because my mom had another baby and needed my sisters room. I had the bigger room so she moved in with me. Madelyns room is totally bigger then coles office but thats ok his is just fine for a new baby. Madelyn has lots of toys a play kitchen and doll house in her room. I dont want to take them out as she has to share so much already with the daycare kids in the rest of the house. But i guess we will cross that bridge when we get there. We still have a lot of time.

Well thats all from me for now. I will update soon with a new post about my levels and what i was eating for trimester one.

Monday I have blood work to do for the genetic screening that tells you your risk factors for downs and trisomy 18 etc and dropping off my next blood dot. i sitll do them twice a week on Mondays and Thursdays.

 

Thanks for reading this far!

Oh i almost forgot to add,  On this day, 3 years ago. IT was Madelyn’s official due date and I was 40 weeks pregnant. She held out another 10 days . So its crazy to think next Monday she will be 3 and here we are doing it again.

 

Here is a little throw back from that day :

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Baby Number 2 / Maternal PKU journey 2

4 and 12 week blood profile

Posted on by Amanda Horner

 

 

With each pregnancy my metabolic team sends out lab requisitions for a blood profile panel done veniusly from our arms.  These are typically done at intervals. The First is the day you find out or as soon as you can get to  lab. Then 12 weeks , 20 weeks and 32 weeks.

I did my initial blood work on December 4th and my 12 week blood work on Feb 4th.

They are just analyzing our amino acids, and nutrients etc to make sure we are getting enough formula and supplements and to see if any dietary changes need to be made.

Something we look at specifically for me is the ferritin. I have notoriously low ferritn and usually am iron deficient anemic. I always need to take iron supplements even when im not pregnant.

Currently I am taking Folic acid 1 mg, an Omega 369 and Ferrous Gluconate in conjunction with my formula. Because of my formula I dont need a prenatal vitamin.

Most of these results wont make sense to the average person but I like to share them as a part of my journey as well as to track my progress and any changes.

Here is my results from my first blood profile done on December 4th 2018

Hematology
WBC
5.7
4.0-10.0
10*9/L
RBC
4.78
3.50-5.00
10*12/L
Hemoglobin
150
115-155
g/L
Hematocrit
0.44
0.35-0.45
L/L
MCV
92
82-98
fl
MCH
31.4
27.5-33.5
pg
MCHC
342
300-370
g/L
RDW
11.6
11.5-14.5
%
Platelet Count
244
150-400
10*9/L
Differential
Neutrophils
3.1
2.0-7.5
10*9/L
Lymphocytes
2.3
1.0-4.0
10*9/L
Monocytes
0.3
0.1-0.8
10*9/L
Eosinophils
0.0
0.0-0.7
10*9/L
Basophils
0.0
0.0-0.2
10*9/L
Granulocytes Immature
0.0
0.0-0.1
10*9/L
For Hematology Reporting Changes and
RBC Morphology Grading, please visit
LifeLabs BC Website at
http://www.lifelabs.com/sites/content_
authoring/healthcare-providers/
Physician%20Newsletters/HCP%20Newsletter
%20June%202018%20FINAL.pdf
Biochemical Investigation of Anemias and Iron Overload
Ferritin
24
15-247
ug/L
Adults: <15: diagnostic of Iron Deficiency
15-50: Probable Iron Deficiency
51-100: Possible Iron Deficiency
>100: Iron Deficiency unlikely
persistently >600: Test for Iron overload

Children: <12: diagnosis of Iron Deficiency
http://www2.gov.bc.ca/gov/content/health/
practitioner-professional-resources/bc-
guidelines/iron-overload
General Chemistry
Albumin
46
35-50
g/L
Lipids
Cholesterol
4.76
2.00-5.19
mmol/L
LDL Cholesterol
2.96
1.50-3.40
mmol/L
The optimal LDL cholesterol level for
intermediate and high risk individuals
is <= 2.00 mmol/L. If triglycerides are
=> 1.50 mmol/L, consider monitoring of
alternate lipid targets non HDL-cholest-
erol or apoB. For low risk individuals
with LDL cholesterol => 5.00 mmol/L,
target reduction of LDL cholesterol
=> 50 percent. See Can J Cardiol 2013
vol 29 pgs 151 to 167.
HDL Cholesterol
1.36
>1.19
mmol/L
New method effective September 17,2018,
with improved specificity and reduced
interferences in patients with liver
disease.

For further information please contact
the Bio-Chemist on call at 1-800-431-
7206.
Chol/HDL (Risk Ratio)
3.50
<4.4
Non HDL Cholesterol
3.40
mmol/L
Non HDL-cholesterol is calculated from
total cholesterol and HDL-C and is not
affected by the fasting status of the
patient. The optimal non HDL-cholesterol
level for intermediate and high risk
individuals is <= 2.60 mmol/L. See Can J
Cardiol 2013 vol 29 pgs 151 to 167.
Triglycerides
0.96
<2.21
mmol/L
Homocysteine
7
<15
umol/L
Reproductive and Gonadal
Serum HCG
Chorionic gonadotrophin
Sent to Royal Inland Hospital.
Physicians may call 250-374-5111 for results.
Metals
Selenium
Selenium
1.60
1.20-2.09
umol/L
Bone Markers
25-Hydroxyvitamin D
100
75-150
nmol/L
This is the test of choice to assess
Vitamin D status when indicated. Testing
asymptomatic patients at low risk of
deficiency is not usually required in
view of the safety and low cost of
supplementation.
<25: deficient
25-74: insufficient
>200: toxic
Total 25-OH Vitamin D represents the sum of
25-Hydroxylated Vitamin D2 and Vitamin D3
species.

 

and to compare here are my 12 week labs from feb 4th 2019, The Plasma amino acids and my blood card are still pending so I will add those tomorrow when i get them.

 

Hematology
WBC
8.8
4.0-10.0
10*9/L
RBC
4.51
3.50-5.00
10*12/L
Hemoglobin
142
115-155
g/L
Hematocrit
0.42
0.35-0.45
L/L
MCV
92
82-98
fl
MCH
31.5
27.5-33.5
pg
MCHC
342
300-370
g/L
RDW
12.2
11.5-14.5
%
Platelet Count
229
150-400
10*9/L
Differential
Neutrophils
6.0
2.0-7.5
10*9/L
Lymphocytes
2.4
1.0-4.0
10*9/L
Monocytes
0.4
0.1-0.8
10*9/L
Eosinophils
0.0
0.0-0.7
10*9/L
Basophils
0.0
0.0-0.2
10*9/L
Granulocytes Immature
0.0
0.0-0.1
10*9/L
Biochemical Investigation of Anemias and Iron Overload
Ferritin
37
15-247
ug/L
Adults: <15: diagnostic of Iron Deficiency
15-50: Probable Iron Deficiency
51-100: Possible Iron Deficiency
>100: Iron Deficiency unlikely
persistently >600: Test for Iron overload

Children: <12: diagnosis of Iron Deficiency
http://www2.gov.bc.ca/gov/content/health/
practitioner-professional-resources/bc-
guidelines/iron-overload
General Chemistry
Albumin
40
35-50
g/L
Lipids
Cholesterol
4.71
2.00-5.19
mmol/L
HDL Cholesterol
1.57
>1.19
mmol/L
New method effective September 17,2018,
with improved specificity and reduced
interferences in patients with liver
disease.

For further information please contact
the Bio-Chemist on call at 1-800-431-
7206.
Chol/HDL (Risk Ratio)
3.00
<4.4
Non HDL Cholesterol
3.14
mmol/L
Non HDL-cholesterol is calculated from
total cholesterol and HDL-C and is not
affected by the fasting status of the
patient. The optimal non HDL-cholesterol
level for intermediate and high risk
individuals is <= 2.60 mmol/L. See Can J
Cardiol 2013 vol 29 pgs 151 to 167.
Homocysteine
5

 

the plasma amino acids are frozen and spun and sent to the newborn screening laboratory in Vancouver along with my blood dot cards so they take a bit longer to get results back. When I am not pregnant I do blood dots once a month and on average they take 10 days to get results back. Now that I am pregnant I do them Mondays and Thursdays, drive them to the lab and they are couried through the intra lab mail and I get the results with in a few days. Usually I get Mondays results on Wednesday of the same week, and the Thursday results on Monday or Tuesday of the following week.  I will post a summery of my phe results and my tolerance changes at the end of each trimester so be sure to check back!

 

 

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Baby Number 2 / Maternal PKU journey 2, MPKU Journey!

Announcing baby number 2 !

Posted on by Amanda Horner

IMG_2333

 

Well, Here we go again! It seems God had other ideas for us and has sent us a second unexpected unplanned blessing.  I learnt on December 3rd that we where expecting again but we only just announced on Saturday our news to the world. I am now 12 weeks 2 days along. It was a huge shock and took a few weeks to settle in.  I had all my blood work done on Dec 4th and contacted the clinic asap. We started working right away to get my phe levels down because i had not been on the pre conception diet and had no real plans on having a second baby any time soon. My phe level from Dec 1st was 14.8 so  my clinic dropped my intake down to 200 mg and i started tracking my intake on How much phe ( http://www.howmuchphe.org ) and weighing all my food. I stopped my anti depressants and stopped eating rice and high phe foods immediately.  My hcg levels came back to show i was just around 4 weeks pregnant. I got my levels down into safe maternal PKU range with in 10 days.

 

We had a dating ultrasound done on January 10th. It showed I was 8 weeks 5 days. A bit behind my dates. But because I was on the birth control pill Alesse we were not sure when ovulation or conception was so we are using the ultrasound dates as they are more accurate.  The heart beat at the scan was 188!

 

2019-01-10 11.36.46

At this point only coles parents knew and a few of my very closest and dearest friends.

We had to tell Coles parents at Christmas because I could not eat Christmas dinner. Nothing! I had to take my pasta and my scale and cook my food. Family members noticed and asked alot of questions because I normally allow myself to enjoy mashed potatoes, carrots, Brussels sprouts, applesauce and apple pie at Christmas but couldn’t.  We just said to everyone else that i was watching my levels.  Morning sickness was and is hitting me way way harder this time.  And OH! The food aversions!!!! food is my enemy! Getting enough calories in with such a low tolerance is insane. I changed my formula twice in those early weeks because i could not handle it.

 

Now at 12 weeeks pregnant I am at 240 mg but I get 138 mg just from my formula! so it does not leave alot of room for food.  I pretty much dont eat breakfast just have my formula.  I have a mix quick low pro muffin or waffles at lunch and low protein pasta at dinner.

Some days i am so sick i dont want to eat and other days im so hungry that it makes the nausea so much worse!

Some days id sell my liver for some real food! I want nothing more then mashed potatoes, rice, applesauce, stir fry, hash browns and all my favorite comfort foods. I cant wait for my tolerance to go up. Even just a little bit!!!

I have already seen my midwife, she prescribed diclectin so that has made things a bit easier and able to get those calories in so with more calories my levels are going back down, maybe i will see an increase next week!

I do my blood dots Mondays and Thursdays and take them into the lab to be courier to newborn screening in Vancouver.  I drive them in on Monday and my best friend chantal does Thursday because i have day care kids all day an cant leave with them.

 

Today I did my 12 week blood work at the lab. The PKU Clinic has sent me lab requisitions for 12 weeks, 20 weeks and 32 weeks.

2019-02-04 10.53.382019-02-04 07.19.32

 

My next appt is with the OBGYN on march 11th and then our midwife on march 12th as we are doing shared care again. Im lucky to have the same OB and midwife that I did with our daughter.

We are scheduling our 20 week echo/cardiogram with maternal fetal medicine at bc women’s hospital and will see my PKU clinic then too. We are hoping to find out the gender this time at this appt as well.

Our due date so far is August 17th so A summer baby this time! Hopefully its not a 40 degree summer with lots of forest fires again! I am still shocked we are doing this again!

I am so happy I was able to get my levels down before ogangenisis which occurs at 6 weeks of embryo development. IF you levels are high at 6 weeks and beyond it can be very bad for the baby and cause serious impairments as well as death or deformities.  I just thank god we caught it early enough and there is no danger or threat to the baby now. If I caught it later or was not able to get my levels down experts recommend an abortion because the risk of deformity or handicaps and mental disabilities, and death are so high. I am so eternally grateful to god, to my pku team and to my support network and my husband that i was able to have the strength and ability to get them down!

2019-02-02 20.39.48

WOW! I will admit i cried for 3 days after i found out with so much fear on how we would make this work how having 2 kids will be and how will Madelyn handle it!

so when the stress gets to much we just remind ourselves one day at a time, baby’s are a blessing and we will make it work! of course we also agree that 2 is enough! so even though we are twice blessed we also know and appreciate this is our last . So just trying to soak it all in and take it one day at a time!

1 month today Madelyn turns 3! She is doing amazing.  Fully potty trained , sleeps all night in her own room, no more soothers , hasn’t had a bottle since before she was 2.  She has her first dentist appt next week and she is so advance still and talks amazingly well. Sometimes I forget she is not even 3! she is high energy and busy. She loves swimming and dancing.

She is excited to be a big sister!

IMG_2360

 

She tells me stories on how she is going to be mommy’s helper. She will help change diapers and sing songs and dance for the baby. she knows there is a baby in mommy’s belly and she will talk to my stomach and ask to see the baby. She pulls up my shirt and says keep growing baby!

I hope shes as happy when baby is born lol

 

Be sure to check back often and follow our second maternal pku journey as  I will try my best to record it all again!

 

 

 

 

 

 

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