Monday, February 14, 2011

Twenty Two Pounds

22 lbs.

Since our daughter was born I have been dreading 22lbs.  

When she was born I was determined to make breastfeeding work.  I spent two and a half days in the hospital with lactaction consultants, and mostly nurses, trying to make it happen.  Finally, I noticed a nurse put a surgical glove on and put her index finger in Evelyn's mouth.  It seemed odd, yes, but you have to remember I was post partum which meant a myriad of crazy things were already going on in that hospital room.  A part of me thought something of it, but I pushed it down.  She was born totally fine, we'd already assured that through various tests and a pediatrician check up.  

What I did not know was that the nurse had come to a conclusion when she put her gloved finger in my newborn's mouth, and when she left she called a pediatrician to come back the next day and confirm.

I really hope people understand how crucial nurses are to our medical care.  We take such care to find the perfect doctor, but in the end it's the nurses that you never had a chance to research, who end up doing the care and often times diagnosing.   

Back to Evelyn's story.  The nurse knew it was not the time to tell me what she had figured out, in case she was wrong, but also because it was in the middle of the night.  It was not an emergency and nothing would be harmed by waiting to the morning, and it saved my sanity.  My husband was home caring for our 5 year old because I had wanted her world to stay as normal as possible, given we had dropped this baby bomb shell into her little life.  So I would have been alone, tired and uneducated in what I needed to know about Evie's special needs.  

The next morning, after another failed round of breastfeeding, I was starting to get very concerned about Evelyn's lack of food intake and her weight loss.  It wasn't dramatic, but it mattered to me.  I was to go home that day and I had a baby that was not taking food.  I had voices from breastfeeding advocates in my head telling me not to introduce the bottle and to push through. I was thankful when another pediatrician came so I could tell her how little Evie had taken in since she was born.   Basically a syringe of colustrum, and that was all.  My nurse was still on duty and she came in with the DR.  I'm grateful for that because she was prepared for my little melt down, and another nurse would not have had my baby on her mind for a few hours.  That mattered to me. 

The doctor explained that she had been called back in and my entire body clenched up and the room seemed to become very small.  

When my older daughter, Nora, was three she was diagnosed with Asthma.  Her breathing was so labored that we were sent from the doctor's office to the children's unit in the attached hospital for meds and around the clock breathing treatments.  We were lucky, it was a very scary situation, but Nora had a treatable issue.  Looking around the children's unit was frightening.  It is a very unnatural thing to see children hooked up to machines and looking too tired to play.  I felt so blessed and lucky that my child was not going to be doing this repeatedly or for a long time.  We left the hospital with an ongoing treatment plan that should help us avoid ever having to return to the hospital.  That is such a blessing.  Such a gift to have a medically care free life with your child.

My mind shot to this with the doctor's words and I was very scared.  She went on to tell me that Evelyn had an abnormality of her soft palate, also known as a cleft palate.  The reason she could not nurse was because she could not create a latch due to the abnormality of her palate.  She also had no stopper between her throat and nose, as a person does normally, so every time she spit up it came out both her nose and mouth.  It also meant that she would need surgery to repair the cleft when she is around 12 months or 22lbs.  

Now, truth be told, while this is far from what you want for your child, it is fixable.  She needs special feeding ,will likely suffer from ear infections from fluids flowing into her Eustachian tubes, 98% born with this issue will require tubes, and after her cleft is repaired she will need speech therapy.  There may be major orthodontic care in her future and a possible second surgery.  


The speech issues will be the next hurtle.  During their first year a child is learning how to make sounds, even though they aren't speaking words.  There are certain sounds Evelyn will not be able to accomplish making until her cleft is repaired, therefore she will have to relearn how to speak in some ways.  It's unknown what speech issues she will have, but she is very similar to her sister, so she will have LOTS of practice talking.  Sadly, the 'duh' sound required to say "daddy" is one she will not be able to say until her cleft repair.  I've decided to try not to dwell on this, and to just look forward to seeing what she comes up with to call her daddy.  Again, that issue will not be forever.

Now, I am calm about all of these issues.  OK, I'm calmish. Learning to feed her and assuring we were getting her enough food was extremely stressful.  She has horrible reflux, which is just bad luck.  But it means, for Evelyn, that she is spitting up a ton through her nose.  Have you ever laughed and had milk come out your nose?  No one would want that to happen 10 or 11 times a day. It hurts. I was terrified to lay her down, worrying about her drowning with spit up coming out of her mouth and nose simultaneously.  I was afraid she wouldn't be able to cry and let me know she was struggling.  So we bought special bottles, numbers of burp cloths, did loads of laundry and my husband sought out a video monitor that would allow us to keep an eye on her and see her when she was, in a rare moment, not in our arms. 

But the truth is this; it is not a heart defect.  It is not cancer.  It is not juvenile diabetes.  Her organs all work.  Those are all lifelong concerns which come with an unknown and difficult path.  This issue has no impact on her developmentally, aside from her speech.  We are so, so lucky. I didn't understand it in that moment.  Then, I cried and cried.  But I know it well now.

But one thing remains hovering around me.  The thing that makes my blood run cold when I remember,in moments when I had just been happily holding her and watching her sleep.  22lbs.  Anesthesia.  A doctor I barely know cutting into a tiny little 22lb body.  What if he stayed up too late the night before reading and reacts a nanosecond to late?  What if the nurse has a cold and my daughter winds up with an infection?  How will they prop her tiny pink mouth open?  And her recovery is horrible.  Days in the hospital.  Arm restraints. She may throw up blood. I've been told I will need to feed her a high caloric diet in the weeks before to prepare for the weight loss.  A weight loss at only 22lbs.


The cold stink of a clean hospital.  

The fact that my mom died from complications of a surgery.

18 comments:

Shabbygal said...

Oh you poor dear! I kinda understand what you are going through my youngest was born with a defect involving his testicles (won't go into great details)when he was born they said he would have to have surgery when he was 18months old it was so hard to watch them take him with his teddy bear into surgery. It ripped my heart in half. He came out just fine though. My niece was born with a cleft palate and she had the surgery at around 14 months she did amazing we were all surprised how quickly she recovered! I will say a little prayer for you and your daughter. Hugs, Traci

Amanda M. said...

I can't know exactly what you're feeling because I haven't gone through this. But I can understand your fears, your dread, and your emotions as a mother. I send you all my love and can promise prayers. And if you're in TX when she has surgery, I'd happily help out or be at your side. XOXO

Cassie said...

My story is opposite yours. My son was born premature and was 2 pounds at birth. 22 pounds was a huge milestone that was celebrated. We will always be here for you. Let us know how we can help. Prayers of peace, understanding and safety are coming your way!

Julie said...

I can't say I know how you feel, but as a mother, my heart hurts that your family has to go through this. I will pray for you all and I hate 22 pounds with you. But that baby girl has some phenomenal genes and she will be amazing! xo

Megs said...

Your blog is so amazing. You have the ability to make people laugh out loud and tear up, all in the same few days. I love my strong little niece and I love her strong parents too. This explained so clearly what Evie is going through. I know I was confused upon first hearing about it and it's nice to share this info with others, especially those who have some knowledge/experience with the same thing. I agree with your shout out to nurses as well. They are key to every single medical experience, but matter even more as a parent when it's our children who need care.

Renee Ann said...

My heart goes out to you in your concern for your baby! I'm sure many have assured you that this will end well. My friend's son has had 3 surgeries for cleft, and he's barely 2 yrs. old. The doctors and nurses were wonderful with him and the parents. I'm praying that that's how it will be for you! Thanks for visiting me at Doorkeeper. Blessings!

angie said...

Oh no. So sorry to hear about your mother, and I can totally understand why 22 lbs would be dreaded. Scary sending a child into surgery. Hope it goes really well when the time comes. She is an absolutely doll.

Joann Mannix said...

So, guess what? My hub's brother was born with a cleft palate. A horrible one. One that back in the day, was almost considered insurmountable. Over four decades ago, he had surgery and today? You can barely see his scar. His mom said once his palate healed, his speech took off. He's now a healthy grown man and in fact, today is his birthday.

Blessings and prayers and every good thing coming your way all in the name of your sweet baby girl. May she fly through her surgery and heal quickly and may this be her biggest hurdle in life. And I'm very sorry about your mom.

Mom to 2 Posh Lil Divas said...

oh, I feel for you! What a worry! I will keep you all in my prayers that the surgery goes well! You are a strong mom with a strong and amazing lil girl!

Bernadette
http://momto2poshlildivas.blogspot.com

Shell said...

Oh, poor baby! Even though it's something fixable, this is still your baby. It's not as bad as it could be, but that doesn't make it any less stressful on you.

The No Wonder Mom said...

Oh my goodness. It is never easy dealing with something that affects your precious little baby. And it is NEVER easy to send your baby in for surgery. I agree with Shell. Hugs to you, as it's so hard to be the mommy in these circumstances.

Kirby said...

Very scary... my son had to have surgery at 3 weeks for Pyloric stenosis, the valve between stomach and intestine hardened closed and he could hit the ceiling with spit-up...talk about scary. The good thing about surgery and babies - they heal so quickly and like you pointed out there are much worse medical conditions than what my son had.

Amanda said...

Thank you, everyone! Your comments and emails are very much appreciated.

As were all the stories about other people you've known with cleftie kids that have had their surgeries and gone on to be just fine.

Traci: Oh, I can't imagine what it's like the moment they take your baby away to surgery : ( So glad he came out fine. Thank you for the story of your niece too! I love hearing she had a quick recovery.

Amanda- I emailed you back : )

Cassie- 2lbs at birth? I can not imagine! I bet 22lbs was an incredibly happy day for you guys. It reminds me to, that we all have our struggles, but I do have a pretty healthy baby. I hope your son is doing very well. Prayers of peace and safety are the best kind.

Julie: Thank you! You are a sweetie face. I can't believe your boy is getting so big already. I bet you can't either. Probably seems like just yesterday you were getting your epidural and assuming it would take away your pain. ; )

Amanda said...

Megs: Thanks for being such a supportive friend. I heart you.

Renee Ann: Another success story! I love it! Thank you.

Angie: Thanks for the kind words. She is a doll, isn't she? : ) She really is perfect.

Joann: Wow, I can't imagine being your MIL and dealing with that 40 years ago. It feels scary now. But I love hearing that it was a very difficult situation and things turned out well for him.
That's my prayer too...that this is her biggest hurdle in life. Thank you, again.

Bernadette: Thank you! I don't always feel strong, but I know I am and can get her through this.

Shell: It is stressful to have something like this go on with your baby. It truly makes me thankful that my kids are, so far, very healthy otherwise. I keep thinking that at least this time next year it will be far behind us.

No Wonder Mom: Thanks, I appreciate the comment. Sending her into the surgery will be the hardest thing I do. But hopefully it will be smoother from there. It will be so good to have it behind us and just move forward.

Kirby: Wow, now that sounds very scary. Is everything fixed up now? I hope it is and no further surgeries are needed. You have a good point about healing well though, they are more resilient than they seem I guess. So sorry for your struggles too.

Mrs Montoya said...

Regardless of whether it's terminal or unfixable any little thing wrong with our babies is heart breaking. It sounds like your sweet Evie has good Doctors (and nurses) on her side. I will pray for peace and wellness for all of you. Sometimes the anticipation is worse than the circumstance itself.

Big hugs to you

Kirby said...

Amanda - as a new mom I took my son to the doctor three days in a row for this projectile vomiting thing, first 2 time got the doc that treated me and my dad and perhaps his dad too, who suggested liquids. Third visit I got the new doc, and she immediately upon exam called a nurse to take baby while she explained to us that we were going to the hospital now and that surgery would be tonight. It was all very scary - AND after the surgery he could only have limited food (think that's the only thing that bothered him) but it was hell for me. He is fine now. Thanks for asking.

Kim said...

What a wonderful perspective you have kept. Anything that happens to our babies is overwhelming. And I agree with you that it is so important to acknowledge our nurses! They certainly don't get enough credit.

The Lovely One said...

Oh, how scary! Any surgery is terrifying-- both for the baby who doesn't understand what's going on, and the mommy who has to stand by and watch. Good luck to both of you!