Tuesday, December 15, 2009

Information Super Highway

Today I took off work. I knew I'd get no sleep last night and had a bunch of research to do today as well as spend time with my Chippy and complete the tasks we failed to accomplish yesterday in Jackson. As presumed, I got a sporadic 4 hours of sleep throughout the night and woke up bright and early to contact the plethora of people that could help educate us on what we needed to know. I contacted the children’s hospital in New Orleans, the lactation specialist at Woman's Hospital, the breastfeeding specialist, my very well educated and professional speech pathologist friend, a local friend who has dealt with a similar issue and then contacted family to help educate them on the situation and what I'd gathered. All that was before lunch. Then this afternoon we headed back to Jackson to do the big Sam's and Academy trip we weren't up to yesterday evening after 3 hours of being at the doctor’s office.


We feel better about the situation now that we are more educated. Of course we don't know the severity of the cleft until he gets here, but know the ins and outs of what steps we need to take and who to contact when the time comes. We still have more research to do...that's what you get when you have an analyst as a mom and a planner as a dad. Given I'm a credit analyst and his dad is a financial planner....it's still in our DNA to plan, evaluate and research all aspects of everything. We can't help it. We are nerds.

I've talked to the head nurse of the cleft & craniofacial team in New Orleans and she is super nice and full of information and happy we are taking matters into our hands now to be better educated it makes it so much easier on everyone once he gets here. She let me know the steps I need to take and what I need to do once Hill gets here they are very proactive in early treatments and surgical evaluations, etc. For example, with the lip they prefer to do the surgical procedure mere weeks after his birth. Yet they don't do the surgery for the palate until about 9 months old. They have a genetic doctor that he would see to evaluate if there are any other disorders or syndromes associated with the cleft. She answered questions I didn't even know I had and we are very impressed with them so far.

UMC (University of Mississippi Medical Center) has a team of doctors and surgeons as well which is fantastic to have so close. We need to learn more about what they can do and their time line of actions, group of doctors, etc. So once we talk to them we will have a better idea doctor wise where we feel more comfortable and of course are open to any other suggestions and recommendations. I think we've decided that we are more into the "team of doctors" route as opposed to chasing plastic surgeons over here and audiologists and periodontists over there and genetic doctors elsewhere. There are about 8 different doctors that need to be involved in the process and evaluation. Communication between these doctors is key to us.

Seemingly the daily challenge that we will face is the feeding, if the palate is affected. Once Hill gets the swing of feeding from the breast, if possible, or specialized / modified bottle then everything else should run smoothly. Each person I talked to stressed the importance of giving him breast milk. I had planned on taking that route anyway, God willing. Hill will need it to help with immunities and each person assured me that in order to make sure he is getting enough at all times it is important that when I'm not feeding then I am pumping more so than most new mothers. As a matter of fact they suggested I rent an industrial grade hospital breast pump. Sounds super sonically abusive to my boobies. They stressed the importance of having a support group of people to help feed him because I would be exhausted. It is dire that he stays plump and healthy for surgeries and that he receive these nutrients and vitamins through breast milk since he may not be eating all the things other kids his age would be developing into. So we need to pray that my boobies produce what they need and I don't tire of being a milking cow...for a time line that is undetermined.

I will be more than happy to answer any questions all of you phenomenally wonderful people have. Please ask them. If I don't know the answer then it's something I need to ask about anyway. The million dollar question is how did this happen? It's definitely not anything I did or didn't do or Chip did or didn't do, it's just a blip in Mother Nature. It affects 1 in 700 children and is usually genetic, but we cannot find where in our families it came from. If we decide to have other children the percentage that this can happen again is extremely high. It's a chromosome disorder and the most common birth defect in babies. How will this affect Hill's children? Well statistics, which I haven't read, but Chip did -shows that there would be a 1 in 14 chance his children would be born with a cleft. With the technology we have today, cleft will probably be obsolete in 600 years when I let Hill marry and have kids of his own.

We must be strong. I'm not going to lie or sugar coat anything.....I'm human and I cry. I'm hormonal so it's often and unannounced. My heart hurts for my little boy and the unknown ahead. I depend on you all for continual prayers, support, comments, a shoulder and allowing me to use this blog as an outlet.

I feel your prayers.....they are so settling.

7 comments:

The Pettits said...

Add me to your list of bottle givers! And i'll be hill's #1 speech/swallow therapist even if he doesn't need it.... ask tanner, we work on our s sound everyday.. (now he adds an s to the end of everything). we r praying for baby hill and can't wait to meet him! love yall!

Melanie said...

I just read and got all caught up! Bless your heart! I am praying for you, Chip, and Hill.

I know the Lord has a plan for all of this, even if you can't see it right now.

Rest assured though that it is all in his Glorious hands!!

Praying with you!!!
Melanie

Wifetastic said...

Get a Medela Lactina pump. That is what Lindsey is using for her baby and it is amazing. Not so bad on the boobies. I will be glad to come down and help you at any time.

Note that if he cannot latch on then you will need to be diligent about pumping 10-12 times a day once your milk comes in. The hospital pump is good but nothing will be as effective as a baby, so you might want to increase your supply with some tricks.

Go to askdrsears.com and kellymom.com for good breastfeeding and pumping tips.

Love you. You are doing great!

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Leah Maria said...

I am praying and thinking of you, Chip, and little Hill. He has such wonderful parents and family who are already gearing up to take wonderful care of him! Thank you for sharing all this with us.

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Jennifer said...

Letting you know I'm still sending love. I seem to have (at least at the beginning) total moo-cow boobies so I'll send you those vibes. Julia was dehydrated early so I started pumping on day 3 or so and I had a TON of milk. I hope you experience the same! It's not necessarily fun, but pumping can be a way of getting a moment of peace if you need it: "Honey, I can't help it! I HAVE to go pump." You can read and pump at the same time.

If for some odd reason you see that you are not producing enough, there's an herb called fenugreek (I think that's the sp) that you could check into -- my friend Becky takes it -- or you could look into milk banks. I read a story about them I think in an Oprah magazine?

I love you!