I write this as I sob uncontrollably after a horrible, horrible night.
Yesterday started like any other day. We had our first pediatrician well check, and all that was on our minds was Sammy's mild jaundice and moderate weight loss. I've also struggled with breastfeeding, I feel clueless.
We left, came home, went about the day when the phone rang. It was the pediatrician. He told us that one of Sammy's state genetic screens had come back "out of range" and needed us to come into the office right away. Nothing in my life has been so terrifying. He didn't answer many of my questions over the phone.
The genetic problem is called VLCAD. I guess it's a problem where babies can't process fats properly, something about lacking an enzyme. But if they go without eating for long periods of time (beyond 3 hours or so) they could go into metabolic distress and need hospitalization, or could even die. It's something that is treatable but terrifying because without strict management could cause serious, serious issues.
No mom wants to get news like this. No dad wants news like this. I hung up the phone and cried and cried.
We rushed Sammy into the pedi and I felt like we left with more questions than answers. We were referred to a geneticist at the local Dell Children's hospital here in Austin. They collected urine and will be getting blood this morning. I'm just sick of the thought of these tests alone, let alone the outcome. Like I said, having left the pedi with more questions than answers, I've been left to look it up online. I guess another confirmation test is to do a skin biopsy on her leg.
Do you all realize how tiny this little girl is? The idea of them doing these tests sickens me. She looks up at me and smiles with her big cheeks, she doesn't understand. I don't understand why this is happening.
With my stress levels high, I've been unable to breastfeed. She's not latching. I'm waking up every 2 hours to feed her formula and then follow with pumping. Even if this screening turns out to be nothing, we probably won't know for a very long time - months even. I have no idea since I still have so many questions lingering. My blood pressure was sky high yesterday after returning from the peditrician. I already felt like I had a level of post-partum anxiety due to how much I feared something hapening to our little girl, then I get news like this. I don't have words to describe how sick I am over it. I'm terrified for our future. I'm horrified by the thought of watching her go down this testing path. I just wanted to spend these first few weeks like a normal family, with our beautiful baby girl.
Why does God keep testing us?
Please pray that this screening turns out to be a false positive. Please pray we get the results quickly. Please pray for our mental health in the meantime. We are not doing okay.
Oh Liz! I a so sorry you are having to go through this! I am praying for you all! (((hugs)))
ReplyDeleteI'm so, so sorry you are dealing with this at what should be such a joyful time. Praying for peace for you and a result of false positive.
ReplyDeleteLifting you all up in prayer. Praying for Sammy's health and peace for you and hubby.
ReplyDeleteGod can do anything! He knew what he was doing when he sent this sweet baby to you and whatever the outcome, you can do it! She was meant to be in your home because you can. Prayers of strength, peace and courage for you!
ReplyDeleteI'm so sorry girlfriend... sending a big hug from one new Mom to another.
ReplyDeleteSending up so many prayers for baby girl!
ReplyDeletePraying for your beautiful family! I'm so sorry you are having to go through this. May you feel His nearness while you wait for results. Hugs!
ReplyDeleteOh Liz I'm so sorry you're having to go through this. You're an unbelievably tough woman who has a wonderful husband by your side. It'll be hard, but you guys will make it through this! You, your husband, and Sammy are in my thoughts.
ReplyDeleteDelinking to say I am so so sorry. My thoughts are with you.
ReplyDeleteBeing a new mom is scary by itself. Having something potentially wrong with your baby is so, so, so much more scary!!! I'm sorry you are all having to go through this, but also so glad that it's something that was discovered early so that you can do seething about it! Hugs to you and your family!
ReplyDeleteYou're stronger than you think, Liz. God is with you and your family thru this crisis, and He will uphold your family. Rely and trust that He has all the details worked out. Hugs!!
ReplyDeleteI am praying! God's got this. He's not gone this far to bless you to let you down now. HUGS!!
ReplyDeletePraying! God will carry you all through this, I am absolutely sure of that. I will be praying for peace for you and your husband and a miracle for Sammy... and quick answers to your questions and test results.
ReplyDeletePraying!
ReplyDeleteOh no, Liz, I am so sorry that you're going through this. It is totally unfair, and I am praying like crazy for you. Sending love your way <3
ReplyDeleteI am so sorry you are going trough this. But please remember there are tons of false positives for state newborn panels. Particularly for babies born before 39/40 weeks. They do not change the range in of normal for babies born early, so preemies often have numbers that are "too" high or low at birth. Then when the panel is repeated at term everything comes back normal. We went through that with both my kiddos.
ReplyDeleteLifting you and your family up in prayers...wishing answers and as much peace as possible as you navigate this new information. Xoxo
ReplyDeleteI'm so sorry your family is going through this. I am praying that everything will be fine with your daughter. You need to try and take some deep breaths, she can feel your anixiety and you do not want that blood pressure to elevate. Breastfeeding is very difficult, my little guy would not latch and I was stressed; ended up back in the hospital with pre-eclampsia. So we ended up doing formula.
ReplyDeleteHaving a new baby is very stressfull and every new mom worries about their baby and does not want anything to happen to them. I was paronoid as well. I think parents who have experienced loss or take extra steps to get pregnant are a little more nervous, I know I was.
Remember, God only gives you what he knows you can handle. He knows you and your husband are the best parents for Sammy and will take great care of her.
If you ever need someone to chat with or relate about bottle feeding - It took me months to get over mom guilt; feel free to email me - shannaeverts@gmail.com
I am praying for you all.
ReplyDeleteI am keeping Samantha, you, and your husband in my prayers. I am so sorry you are going through this- you are so kind and I really hope you get the much needed break/good news you deserve. Huge Hugs
ReplyDeleteHang in there Liz - this is so so so tough, but she will be okay with the love of her awesome parents.
ReplyDeleteRE breastfeeding - I had a seriously awful time with it. Barely produced anything, couldn't get him to latch, etc. I worked closely with the lactation consultants at Special Addition, a nursing and maternity store in Austin, but after 2 weeks I gave up - I wasn't making enough milk, even with hospital grade pumping round the clock, and my anxiety was so high about it that I couldn't even it. The moment I switched to formula, I felt like a brand new person and was able to be the mom that my baby needed. He is 9 months old now, growing like a weed, and just as smart and healthy as any breastfed baby out there. We did a lot of research on formula, and the one we felt very comfortable and happy with was Nature's Only Baby's First dairy formula. We buy it directly from them online, but you can also get it at Central Market, and I think at Sprouts too. It is fully organic and has the very least amount of "unhealthy" additives that many formulas reportedly use. We've had no problems with it, and I'd recommend it over and over again.
Hang in there - you have come SO far, and this little girl needs you to be her strong, happy, healthy mama! If you feel like postpartum anxiety or depression are getting worse, please talk to your OB.
Your infertility in Austin friend,
Kim
Prayers coming your way! ((hugs))
ReplyDeleteSo so sorry! I know how scary that can be! But I am sending prayers for all of you! And it's true - stress can be felt by the baby, so if you need to bottle feed, then do it. I know that's what we ended up doing because i couldn't produce it even with help from lactation consultants. And my baby boy eating was more important, and even though he is not breast fed, he is doing just fine and growing like a weed. So don't feel bad about doing the formula thing. It's not a bad thing at all! My prayers are that the tests come back as a false positive...just hang in there. Many prayers. I know your journey with infertility so well myself...you are not alone and you have inspired many. Just know you have support.
ReplyDeleteLiz and Kevin:
ReplyDeleteI am hoping that we can make personal contact, so I'm giving you my email address. Unfortunately, I've gotten pretty adept at doing "medical research" when the info from physicians/hospitals is vague or confusing. Also, my other daughter is an RN working until recently in the "Mother/Baby" Dept. of a hospital here. She's already looking into the situation. Your fears and feelings are more than understandable and I'd like to help in any way possible....if only by talking. As far as feeding her....by all means don't hesitate to give her formula if that's better for you. I'm all in favor of breast feeding....but because of my circumstances couldn't get the job done and raised 6 very healthy bottle fed children. My email: mscharrenberg@gmail.com Hoping to hear from you and, of course, praying for all of you. Mary
Me again.....Don't know if you've checked the Texas Dept. of State Health Services website. In the "Newborn Screening" FAQs it says:
ReplyDeleteQuestion: What happens if the test result is NOT okay?
Answer: An abnormal or “out of range” test result indicates that the baby may be at higher risk of having one or more of the disorders included on the newborn screening panel. This does not mean that the baby definitely has a disorder. In fact, most babies who receive "out of range" results do not have the condition of concern. If the newborn screen indicates “out of range” results, parents are contacted by their child’s healthcare provider. It is important that parents follow their healthcare provider’s directions for their child’s immediate care and additional testing.
Liz, I've been following your blog for sometime and have been truly inspired by your journey. You are fearless!! Please know prayers for strength, peace and His LOVE have been sent. I too experienced a similar situation with my first and only IVF baby boy via donor egg/husband sperm at 44 yrs. C-section, jaundice, 3 trips back to the hospital for blood tests until my sweet baby boy finally started gaining weight. Stress was my constant buddy and oh tested my breastfeeding attempts. God bless my lacation specialist, my pump and supplementing with formula. Whatever you decide, you are in wonderful company and truly have all of our support. Hang in there and huge blessings to you and your husband. Looking forward to continue updates on Sammy. :)
ReplyDeleteOh, I'm so, so sorry that you and baby Samantha have to endure this extra stress. I hope you find the care and kindness you need as you go through this. You are a great mom whatever is going on!
ReplyDeleteOh Liz, I'm so very sorry you're all dealing with this right now. I can't even fathom how terrifying this must be for you and your family. You guys will definitely be in my prayers. I hope that answers and relief come soon and you can put this all behind you.
ReplyDelete:::hugs:::
Praying!
ReplyDeleteLiz, I'm so sorry for the stress you are going through. I'm a genetic counselor (although I specialize in hereditary cancer now not general genetics. If you would like to talk I would be happy to give you my email address. I know it's easier said than done but try to take some time to relax. One of my favorite things tondo when my girl was younger was take a nice warm bath with her snuggled up on my chest. Relaxing for you and baby.
ReplyDeleteThinking of you and your beautiful little family.
ReplyDeleteI'm so sorry Liz. Sending lots of love and support xoxo
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI would focus on the fact that the test just means out of range and "hey take a look" so to speak.
ReplyDeleteBreastfeeding- It's not as easy as people may make it out to be. It's hard at first as both of you figure it out. Stress hurts a lot, and anxiety as well. Deep breaths, cuddles and just do the best you can. Find a lactation consultant- if your pedi office does not have one, check the hospital where you delivered or the local La Leche League. Formula is FINE, and who knows maybe it will be temporary until she figures out latching. if it doesn't work, you need to do whats best for you as a mom, because that translates to what is best for the baby (you stressed and upset - she will feel it).
Prayers your way.
Liz, I am so sorry you are in this situation where there is no answers and solutions right away. It's so familiar. It brings back memories to me. My baby boy was just 2 weeks old when we had to take him to the hospital. He chocked on his own spit (my theory) and it looked like he has seizure and I panicked. Called 911 and of course they did not let us go easily. We were at the hospital for 5 days.
ReplyDeleteOk, I did not want to tell you my story but let you know that I understand what you are going through and what you mean by they are so little and they depend on you!
Sometimes things sound or feel more darker at the beginning too. When you start getting some answers and solutions then things will brighten up!
Don't stress about breastfeeding. You have to do what is the best in this situation!
Deep breath in and out!
Tomorrow will be the better day! Trust me!