Tuesday, October 13, 2009

Strike Out

I'm all struck out. I've had a few foul balls. I'm at the end of the inning and I don't know how much longer I can hold strong in the game....and yet, the pitcher is still throwing balls at me. They are coming fast. They are curve balls. They are mean. They are hitting me at all my vulnerable spots. I can't take much more.

The anatomy ultrasound today in Denver went fairly well. At least, I thought so, until the Doctor came in to explain their findings. For the first time this pregnancy, our baby was face up. This meant that they could get some great views of the baby's face. He's got big chubby cheeks that are adorable. He has enough hair that even I could see it on the ultrasound. He likes to suck on his fist. He looks like he has my nose.

He also seems to have a cleft lip.

I was assured that from what they could see, his gums all look intact, so it is a minor deformity of the lip on his right hand side. They can't tell the full extent of his cleft lip, and won't be able to until he is born. There are a few things that could arise because of this complication. First, he could have trouble breastfeeding. Really, I could go on about some of the other things they talked about, but that was the last straw for me.

The only thing I have been holding out hope for, with every complication with this baby, is that I would still be able to breastfeed him. I've been told by the Cardiologists that it should be ok to breastfeed him in the days before his surgery. My OB doctors and Perinatologists assure me that this is acceptable as well. However, after talking to the nurse at the NICU, she told me one of his lines that will go through his umbilical cord, to deliver medicine and fluids, will not only make it impossible to hold him, but I wouldn't get to breastfeed him either.

I know...I know. I can pump...the baby will get the breast milk...and then after his surgery and recovery I can breastfeed him. I know all that. But you know what, it doesn't seem good enough to have to wait weeks to do that. I want to breastfeed him in the beginning. Before his surgery. When he is hours old. I want to hold him through the night. I want to change his diaper. I want to rub lotion on his body. I want to nurse him!! I don't want to have to walk down the hall, or up to another floor, or across the street to another hospital to see my baby in a "hands off" approach. It's killing me.

Then today, when the doc said breastfeeding may be impossible. I wanted to scream "Are you kidding me?" Seriously. I have just had the only thing I was holding on to ripped from me. I know it's not a definite possibility. His cleft lip could be more minimal than they anticipate. It could be easily fixed right away. I could be moping over nothing. I just feel like I've been very accommodating with all the setbacks. All I want to do is breastfeed my baby. It shouldn't be so difficult.

Because this baby now has two strikes against him (heart defect and cleft deformity), these conditions COULD be linked with a chromosomal abnormality (specifically the 22nd chromosome). An amnio will be scheduled around 38 weeks, both to check on his chromosomes and to make sure the baby's lungs are ready for delivery. If he's ready, I'll have the baby after that.

Until then, I GET to meet with the "Oral" team, to learn more about the cleft lip, and I GET to go in for stress tests twice a week (thankfully here in Colorado Springs), to monitor the baby's heart rate. The good news is, I can continue my weekly checkups with my OB here. I don't need to go to Denver to meet with any more OB doctors, until I'm 38 weeks and they are ready to do the amnio.

Another piece of good news is that the baby is over 5 pounds now. Even though I continue to measure small, the baby is measuring perfectly. He is strong and healthy. I just need to be strong now. Please pray that I'll have the strength for this. I just feel like I am getting beat down at every turn.

28 comments:

Holmes Home said...

You have all my love, thoughts, and prayers.It will all work out and you will have the strength to make it through everything thanks to a Father in Heaven who loves you very much. Wish I could be there for you.

I'm Always Rite said...

You are by far one of the strongest people I know! You are Wonder Woman Shaina! Plus also you rock!
You and your little man are in my prayers constantly!

Mags said...

I have been following your blog, Colleen's and even Heidi Boyd's. You have such strong people around you there. You have family that is coming to help out as well. From what I have read and know of your family, you are strong. Weber women seem to be superwomen in disguise. I will keep you in my prayers.

Julz said...

You and your family are in our prayers. Please let me know if you need anything.

runningfan said...

I'm so sorry for the setback! It's so hard when expectations aren't met. Let yourself grieve the loss so you have the strength to face the rest.

Colleen said...

I am sitting here shedding tears for you. I know you have been holding on to that hope. I am so sorry for this development. Of course my prayers are with you and baby boy K, as are all our family prayers. You are so strong, I am always amazed by your strength in the face of this heartache. And you have every right to fall to pieces at times, so make sure you allow yourself to do that. We missed you tonight, but I wouldn't have been there either after the day you've had! I am glad the trips to Denver are over for a bit, and I am glad he is growing so well! That is at least one in your favor! Prayers, prayers, prayers.

Queen of Chaos said...

He gets healthier and stronger every day it seems. You will get to hold him and love him. It's so hard and depressing, I know. I wish I could make it all better. Hold onto that you will have a baby that will most likely live. My heart is with yours.

Jen Sue Wild said...

You know I love and you know I feel for you right now.. Get mad mourn over the things that you wont get to do.

The more things that I new were wrong with William the better it was for me But still it was punch to the gut when I found out more negative information.


I know this sounds silly but look at it as a gift you wont be suprised when he is born and you will allready have a game plan as what you will need to do. Instead of being shocked when he is born.

The more things that I new were wrong with William the better it was for me But still it was punch to the gut when I found out more negative information.

Chloe said...

I'm not sure what to say - another blow that really does seem so unfair. But it's true what everyone is saying, you are So strong, Shaina. However, even though we all think you are so strong, still take time to be angry and frustrated and mourn these latest setbacks and changes - it's the human thing to do.

courtney said...

I'm so sorry Shaina, it's hard to have the one thing you thought was a given taken. What can you say when logically you know eventually things will be fine but emotionally you feel drained. Just know that there are a lot of people out here who are sending up prayers and love to you!

Cailean said...

You don't know me but I'm a friend of Colleen's from her hometown and also LDS. I have started following your blog and am feeling so strongly that the Lord has a plan for your baby and for your family. We've had some women in our ward give birth over the last few years to babies who have only lived a day or two, and recently one who was born with a multitude of problems and is constantly in and out of the hospital. These women have exhibited faith in the face of hardship and have been given the peace that they need to make it through each day. I know you will feel that same peace and comfort - the Lord will not leave you alone in your time of need!!! It might be harder to feel that comfort and the Spirit but it's there always!

Jenni said...

Shaina--my heart goes out to you. I'm not saying this even comes close to what you may experience in the near future, but when Caden was born he was taken to the NICU from the delivery room where I wasn't allowed to feed him because of tubes all over the place for the first few days. It was awful because honestly, all I wanted was to take care of him and the motherly part of me thought that was the one and only main way I could at that time. I was wrong. Just being in his presence, holding him when I was allowed, taking that walk down to the NICU multiple times a day from my room when I was in the hospital...what he needed was his mom there in any capacity that I could be. That's all you can do...be there in whatever capacity you can be. HUGS to you. You're allowed to be frustrated--you're human. Praying for you!!!

Vix said...

Oh Shaina, how rotten for you to be going through all of this. My thoughts and love are with you during this hard time. My lovely Mummy always tells me that only the best people have to struggle with things because it teaches us to stretch and grow. I have said before and will say again your little boy is incredibly lucky to be being born into such a wonderful family x

Andi said...

What doesn't kill you only makes you stronger. HE doesn't give you more than you can handle. He may push you to your limits but you'll come out on top in the end. Hang in there, it will all work out in the end.

LollyChops said...

It's going to be ok Shaina! He's growing and gaining weight! That is a good sign! Just keep talking things out with us and with your friends and family there. Lean on those around you! We are all here for ya girl!

DougandSheilah said...

Hang in there. You can do it. Blessings help even if you already got one, another for comfort and strength wouldn't hurt.

RDad said...

Hey, I'm Lolly's friend and just wanted you to know everything is going to be OK. I'm a father (3yrs and 3 months - you're pro on the other hand) and realize how much stress that is. Don't worry and keep your head up. You are a great mom and your little one will be fine. I pray for that!

Maynards said...

Dang girl. That is pretty rough. It must seem like everything is being pulled out right from under you.
It is amazing that when we run out of strength to go on, others seem to have the strength for us to help us out for a while.
You have great friends and an awesome support group. Lean on us, we are here for you.
Our prayers are always with you. It is o.k. to cry..just get it all out.

Nancy said...

You, your family, and your precious baby are in my thoughts and prayers everyday. Hang in there it's a tough road ahead, but life challenges help us to become stronger individuals. Your baby surely can feel how much he is loved!

Carol said...

You can do this - you will make it through with a beautiful baby boy. It's not what you expected or hoped for, but you can do this - you are strong, and you are his mother... My thoughts are with you and your family as you adjust to the newest challenge.

dippyrooroo said...

Wow. Take the time to make as many of those purses as you need to. And then make a quilt, or a whole scrapbook, or what ever you need to sooth your aching soul. This pregnancy may be full of strikes, but your baby hit a home run when he picked his mom and his family.

Nancy W said...

Hi Shaina! I'm behind on my blog reading so my apologies for just now responding. I'm sure that you will get past all this hard stuff and from reading your blog it sounds like you have a great family to support you! You will be in my prayers and you can get past anything you set your mind to! Hugs from Conroe, TX!

Adri said...

I hadn't read this post when we talked at playgroup today. I'm so, so sorry to hear about more complications. Prayers continue, my girl.

DougandSheilah said...

Doug and I were just remembering and Ben had an umbilical IV and I was still able to breastfeed adn hold him. I know this may not make a difference in your case but it is something to question and get another opinion on if you want. Good luck.

Dana said...

Just wanted to let you know as a reader (who didn't realize how close you lived...I'm just south of Denver) that I'm praying for you and your family. We recently adopted a 14 year old from China who was born with cl/cp, among other things, that unfortunately went unrepaired until she was 6. You're in my thoughts.

Elise said...

I'm so sorry Shaina!! I know everything seems impossible and not fair right now and partly, it is not fair but believe me, as a person who has been through the NICU thing with both kids, it is not as bad as it seems. It will be hard but everything will work out how it is suppose to. The doctors are only looking out for your son and what's best. Most likely, breastfeeding takes a lot of calories and energy that your son needs to save his energy for surgeries and getting better. Pump and when he is able, you will be able to start breastfeeding him. Maybe ask the doctor about kangaroo care, something available as long as he is not on any breathing help. Please call or email me if you need to talk about anything. Thinking and praying for you.

Yuan said...

It's true that each baby is a blessing. I think he will be fine and what you need to do is keeping trying. Never give up. If you want to learn more about cleft lip and palate, please check out Operation Smile, a worldwide children’s medical charity to help all children with cleft lips.

annafowler said...

Shaina, you don't know me. I randomly came across your blog when I was looking online for a homemade pattern to make no-no's (which are little arm restraints they have kids wear after cleft surgeries). I was really touched by your post. I have 2 little boys with clefts. I'll be honest, the journey has been hard, and my heart too has ached that I haven't been able to breastfeed (although they both had cleft palates- I've known many moms with kids with cleft lip only and they were still able to breastfeed). Good luck to you and please let me know if there is anything I can do to help. We are pregnant with our 3rd (don't know if there is a cleft yet- we'll find out on Friday), and I can understand the emotions you must be experiencing right now. Here's our family blog if you want to check it out: www.fowlerfam.blogspot.com

Sincerely, Anna Fowler